Parenting and Disability

PARENTING AND DISABILITY

Richard Olsen and Harriet Clarke

Disabled parents’ experiences of raising children

PPP R E S S

The•POLICY

PARENTING AND DISABILITY

Disabled parents’ experiences ofraising children

Richard Olsen and Harriet Clarke

First published in Great Britain in April 2003 by

The Policy PressFourth Floor, Beacon HouseQueen’s RoadBristol BS8 1QUUK

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© The Policy Press 2003

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN 978 186134 364 2

Richard Olsen is a Research Fellow at the Nuffield Community Care Studies Unit,University of Leicester and Harriet Clarke is a Lecturer in Psychology and SocialWork in the Institute of Applied Social Studies, University of Birmingham.

The right of Richard Olsen and Harriet Clarke to be identified as authors of thiswork has been asserted by them in accordance with the 1988 Copyright, Designs andPatents Act.

All rights reserved: no part of this publication may be reproduced, stored in a retrievalsystem, or transmitted in any form or by any means, electronic, mechanical, photocopying,recording, or otherwise without the prior permission of The Policy Press.

The statements and opinions contained within this publication are solely those of theauthors and not of The University of Bristol or The Policy Press. The University ofBristol and The Policy Press disclaim responsibility for any injury to persons or propertyresulting from any material published in this publication.

The Policy Press works to counter discrimination on grounds of gender, race, disability,age and sexuality.

Cover design by Qube Design Associates, Bristol.Front cover: photographs supplied by EyeWire and Stone.Printed and bound in Great Britain by Hobbs the Printers Ltd, Southampton.

Dedicated with love to our parents, Pauline (RO),Jane and Michael (HC)

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Contents

List of tables viiAcknowledgements viiiTerminology ixIntroduction xi

one Invisibility and exclusion 1Introduction 1Disabled parents: invisibility and pathology 2The parenting of disabled people as a social problem: the case of 13‘young carers’The legislative and policy context 19Conclusions 27

two Demographic characteristics of the final sample 31

three Access to support 37Introduction 37Use of formal support 38Barriers to the use of formal support 40Barriers to the use of informal support 48The interaction between formal and informal support 54Developing a broader understanding of the origins and interplay 57of support needs

Support needs are mainstream but barriers are special: the principles 63of service response

Conclusions 66

four Children’s involvement in domestic and ‘caring’ work: 69new insightsIntroduction 69Identifying ‘young carers’ 70Rhetoric and reality: what do children actually do? 73‘Young carer’ service provision 83‘Young caring’ in context 85Conclusions 100

five The life course: dimensions of change in parenting 103and disabilityIntroduction 103Impairment, disability and the life course 104Changes in family composition 109Parenting over time 116

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Parenting and disability

Recent changes in parental impairment: onset and variability 120Looking to the future 123Conclusions 125

six Individuals, families and relationships 127Introduction 127Disability, relationships and parenting 128The social model, impairment and illness 136Conclusions 144

seven Conclusion 147Introduction 147Challenges for disability theory, policy and practice 148Towards more equal opportunities 149Children, parents and the meaning attached to domestic 150and ‘caring’ work

Future directions 151

Appendix one Methods 153Introduction 153Stage One 154Stage Two 158Recruitment 159Data management and analysis 162

Appendix two Comparisons with the ‘Looking After Children’ 165(LAC) community sample

References 171Index 185

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List of tables

2.1 Sex of parent (by impairment group and family shape) 312.2 Sex of parent (by any mental health impairments and family shape) 322.3 Identification as a disabled person (by primary impairment group) 322.4 “When did impairments begin to impact on day-to-day life?” 33

(Primarily physical and/or sensory impairments/mental healthimpairments all considered)

2.5 Basic information for 12 Stage Two families 34-53.1 Current use of formal services by Stage One families 383.2 Parental use of any social care services (by family shape and 39

impairment group)3.3 Social work contact with families (by family shape) 393.4 Current economic and educational activity of disabled parent 58

(by sex, family shape and impairment group)3.5 Parental reports of total household income 583.6 Housing status (by family shape and impairment group) 594.1 Parent-identified ‘carer’ status of target child 704.2 Proportion of target children identified as ‘young carers’ or 71

involved in ‘caring’ activity (by age, sex and parental impairment group)4.3 ‘Young carer’ status of target child (by parental impairment group and 72

family shape)4.4 Parental reports of target child’s involvement in domestic work 734.5 Level of involvement of target child in domestic work 744.6 Involvement in household tasks (by reported ‘young carer’ status, 75

age, parental impairment group and family shape)4.7 Child involvement in our nine ‘caring’ tasks (by family shape 77

and impairment group)4.8 Child involvement in helping with household chores (by family shape) 784.9 Child involvement in helping with practical tasks (by family shape) 784.10 Child involvement in assisting with personal ‘care’ 79

(by impairment group)4.11 Child involvement in assisting with household chores 79

(by impairment group)4.12 Children’s reported level of involvement in household and ‘caring’ tasks 814.13 Children’s reported involvement in tasks (by family shape and 82

impairment group)4.14 Knowledge of a ‘young carer’ group in the area (by ‘young carer’ 83

status, primary impairment group and family shape)4.15 Attendance at ‘young carer’ groups (by ‘young carer’ status, 84

primary impairment group and family shape)5.1 “Do you think you will have more children in the future?” 109A.1 Comparison between the LAC community sample and 167-70

PANDD sample for a range of self-care and developmental skills

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Acknowledgements

We gratefully acknowledge the support of the Department of Health in fundingthis research under the Supporting Parents programme. We would also like tothank the many organisations, and the individuals within them, who supportedus throughout this research. They helped in various ways, including givingadvice on the design and content of the research, putting us in touch withfamilies directly, and giving us a platform from which to publicise the work. Weare particularly indebted to Fairdeal, an advocacy organisation run by disabledpeople in Leicester and Leicestershire, for their initial support in putting us intouch with disabled parents locally. We would also like to thank the membersof our advisory group for their supportive advice throughout the research.They were Jo Bodsworth, Julie Falvi, Debbie Mumford, Jools Potter, JacquiSealy, Jackie Shenton, Peter Smith, Roy Taylor, Vince Thacker and MicheleWates. In addition, we would like to thank Trent Focus, a primary care researchand development network based at the Universities of Leicester, Nottinghamand Sheffield, for their help with recruitment. Furthermore, we would like toacknowledge the helpful support of Sue Moyers, of the University of Bristol,for her help in providing data from the Looking After Children communitysample.

We also received a great deal of support from colleagues within the NuffieldCommunity Care Studies Unit at the University of Leicester. In particular,Gillian Parker and Billie Shepperdson gave us encouragement and supportthroughout the project, as well as the benefit of their wide experience. Wereceived great support from secretarial colleagues Anne Ablett, Teresa Faulknerand Linda Norman. We also want to express our thanks to Rachel Clarke whoworked on the management of the quantitative data in SPSS.

Finally, we would like to thank all the members of those families weinterviewed. We hope that this book does full justice to the range and depth ofexperiences they shared with us.

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Terminology

Social research places particular importance on labels and definitions. This isespecially so in the areas of disability and family life, where they reflect theassumptions that researchers make about what it is to experience disability, andwhat it means to be a parent, mother, father, daughter, son, and so on.

In our research, we have conformed to the terminology and definitions ofdisability preferred by most organisations of disabled people in the UK. Forexample, we prefer the terms ‘disabled people’ and ‘disabled parents’ to ‘peoplewith disabilities’ and ‘parents with disabilities’. These latter terms, still popularlyused about (and by) disabled people in North America and elsewhere, locatedisability within the bodies (and minds) of disabled people themselves. Theydo not sit easily with our commitment to a social model of disability that seesthe fundamental experience of disability as one of social organisation, accessand equality of opportunity. In this book, then, the term ‘disabled parent’ isused inclusively, not just for those with physical impairments. When we dowant to distinguish between the experience of parents with differentimpairments, we use the terms ‘physical impairments’, ‘sensory impairments’and ‘mental health impairments’. The first two terms are commonly acceptedways of describing the impairments of disabled people; however, the latterterm is less commonly used, but is chosen to reflect our commitment to includeall parents within a social model perspective that differentiates betweenimpairment and disability. In addition, we argue that alternatives serve eitherto locate the ‘problem’ in impairments themselves (‘mental health problems’,‘mental health difficulties’) or define people in terms of their service use (‘mentalhealth service user’, ‘mental health system survivor’) in a way which would notonly be unacceptable for people with physical and sensory impairments, butwhich does not reflect the lived reality of the people in our study, many ofwhom had not accessed the mental health ‘system’ and can hardly therefore besaid to be ‘users’ or ‘survivors’ of it. In Chapter Six, however, we use the term‘mental distress’ in preference to ‘mental health impairments’. This reflects ourargument that the social model is in need of renewal in order adequately toaccount for the experiences of parents experiencing mental distress, and thatthe neat separation of impairment and disability in mental health terms isinappropriate given the multiplicity of causes – physical, biological as well asexperiential and social – of mental distress. We acknowledge, however, thatadequate terminology that synthesises a social model approach with theparticular experiences of people with different impairments is yet to be developedfully; we simply present here the thinking behind the approach we have taken.

We have tried to be consistent in our labelling of family members. Thequestionnaires that we developed at the outset of our research used the terms‘parent’, ‘spouse’ and ‘child’ to describe the people in each family that weinterviewed. However, in this book we prefer the term ‘partner’ to spouse

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when talking about the other parent in two-parent families. By consistent useof the terms ‘mother’ and ‘father’, we specify the gender of parents. Similarly,we label children as ‘son’ or ‘daughter’.

When quoting from interviews with family members, we have used codes toindicate the speaker. The following are examples:

Mother (PI), dual-parent family indicates a mother with physicalimpairments in a dual-parent family.

Father, dual-parent family (mother, MHI) indicates a father in a dual-parent family whose partner or wife has mental health impairments.

Son (14), single-parent family (mother, PI, SI) indicates a 14-year-oldson, in a single-parent family, where the mother has both physical and sensoryimpairments.

When quoting families that took part in Stage Two of the research, each familyis denoted by a letter from A to L. This enables the reader to refer to Table 2.5for more background information on each particular family.

In some families, both parents are disabled. In order to avoid confusion, wedo not represent the impairments of partners or children of the disabled parentin the above coding system. If a partner’s or child’s disability is significant, weelaborate in the text.

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Introduction

In recent years, disabled parents have grown increasingly vocal in challengingthe barriers that they face in fulfilling their parental role. They, and theirorganisations, have begun to place issues of importance to disabled parents onnational and local policy agendas, often in collaboration with allies in academiaand both statutory and voluntary sectors. They have also sought to transformpublic and professional perceptions of disabled people as the recipients (asopposed to providers) of ‘care’, which often reflect a deep-seated antipathy tothe very idea of disabled people having children. Indeed, we deliberately chosethis book’s subtitle – Disabled parents’ experiences of raising children – because ofthe assumption that would inevitably be made in some quarters of a bookentitled Parenting and disability: that it must be about disabled children and their(implicitly non-disabled) parents. An important aspect of these attempts tochallenge dominant perceptions, and to raise the profile of the parentalresponsibilities of disabled people, is the development of a literature that viewsparenting and disability as essentially about equal opportunities. Others, oftendisabled parents themselves, have already begun this process and we hope thatthis book makes a contribution to the development of such a literature.

Our book is the result of a research project entitled ‘Parenting and disability:the role of formal and informal networks’, funded by the Department of Healthas part of its Supporting Parents research programme, and carried out at theNuffield Community Care Studies Unit, University of Leicester, between 1997and 2000. The Supporting Parents programme followed on from previousresearch initiatives funded by the Department of Health, which had pointed tothe ways in which child protection work, as opposed to family support work,had dominated the post-Children Act environment. Therefore our research,with a ‘normative’ group of disabled parents (that is, a group not defined bytheir use of a particular service), was very timely in that it looked at access tosupport for a group of disabled parents who were not predetermined in somesense as a ‘social problem’, or already identified as having ‘failed’ for any reason.This made a research study informed by a social model perspective on disabilitypossible from the outset.

Parenting is simultaneously one of the most private, intimate roles that weundertake and yet is one subject to the greatest public gaze and scrutiny. Itsposition at the intersection of public and private worlds makes parenting awonderfully rich subject to research. Indeed, it is also an enriching subject toresearch, and we know that we have a different understanding of parenting, andof disability, in our own lives as a result of carrying out this project and of beingflying visitors in the lives of the families we met. The public and private facesof parenting also make for data that are complex, difficult and contingent. Theydo not make for easy analysis and flat description. This research, and the processof dissemination we are now undertaking, has therefore involved a process

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whereby the ideas and concepts emerging from the data are continually revisitedand subject to critical scrutiny. From the genesis of the original research studyin the concerns we had about the construction of the children of some disabledparents as ‘young carers’, through the process of designing the research tools wewould use, to the gathering and analysis of the data, the publication of ourreport for the Department of Health, and to the delivery of the final typescriptfor this book, we have been engaged in a continual development of ideas. Thisdevelopment of our ideas is partially in response to the gathering pace of changein the policy and practice backdrop to disability and parenting. This book,then, is more a staging post in the development of our ideas about parentingand disability than a definitive statement.

Chapter One situates parenting and disability within a review of the relevantliterature. We argue that disabled parents have been largely invisible in thattradition of social policy research, which has looked at parenting support and atthe barriers that particular parents face in bringing up their children. Of course,disabled parents are anything but absent from a much larger research traditionthat looks for deficits and pathology in their parenting and for negativeconsequences for children of having a disabled parent. We also look at thepolicy context, focusing in particular on the 1989 Children Act and the 1990NHS and Community Care Act. What role do these Acts play in structuringthe response of formal services to disabled parents? And how will their policyand practice legacies (direct payments legislation, the Framework for the assessmentof children in need and their families, fair access to care services) influence the way inwhich parents are supported?

Chapter Two is a brief overview of the demographic characteristics of thesample of parents and families who took part in the research. A lengthy discussionof methodological issues was thought unnecessary in the body of the text,although Appendix One discusses these issues in greater depth.

In Chapter Three, we tackle the issue of support, and in particular the barriersthat many disabled parents can face in accessing support in raising children. Weargue that the support needs of disabled parents are essentially no different tothose of all parents. It is more important therefore, to remove the barriers toparticipation in parenting than it is to establish an inappropriate welfare responseaimed at meeting their ‘special needs’. We examine access both to formal andinformal sources of support, and the interaction between them. Access tosupport for disabled parents in the context of broader divisions within society,and especially those rooted in social disadvantage and gender, is also discussed.For us, understanding how disability is experienced by parents is intricatelybound up with these broader issues.

Chapter Five places disabled parents’ experiences of raising their children ina life course perspective. Change – be it in the nature of impairments, the sizeand structure of the family, the social and economic circumstances of the family,the needs of individuals (parents and children) in the family, and so on – isfundamental to an understanding of parenting and disability. We consider thechanging dilemmas and choices faced by disabled parents, from decisions about

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Introduction

having children in the first place, through changes to family composition andparental impairment, to their plans for the future.

Chapter Six addresses the importance of seeing parenting and disability asinvolving sets of relationship between family members, and of promoting parentalchoice and control in the ways in which family relationships can be maintained.Our emphasis here is on the social experience of disability, one that affectsindividuals and relationships both within the family and between family membersand the outside world. We also discuss the complex ways in which theexperiences of impairment and the experiences of disability intersect. We dothis in particular with reference to the complex nature of mental healthimpairments as well as to their origin, in many cases, in social experience. Thisrequires us to re-examine (and renew) our understanding of the social modelof disability so that the experiences of those with mental distress can be adequatelyrepresented.

Chapter Seven presents our overall conclusions. It also suggests potentiallyfruitful areas of future research.

1

Invisibility and exclusion

ONE


Introduction

This chapter provides an overview of the research literature concerning theparenting of disabled people, as well as other issues – or ‘problems’ – that relatemore indirectly to the parenting of disabled people. In addition, this chapterplaces our research within some of the key legislative and policy frameworksthat underpin the relationship between the state, disabled parents, and theirchildren.

This highlights three particularly important issues. First, disabled parents areall too often absent from research agendas that emphasise the social andenvironmental context in which parenting takes place. We look at their exclusionfrom the growing body of research that has, in recent years, focused on theprovision of parenting support and education services. However, this reflects amuch broader invisibility: a search of the literature for the terms ‘disabled’ and‘parents’ yields many studies of childhood disability but fewer about parentaldisability. Where parental disability is referred to, it is more commonly in thecontext of elderly, disabled parents, and the role of their adult children in caringfor them, reflecting a deeper antipathy to the fact of disabled people havingchildren. This itself reveals the assumption that disabled people are somehowinevitably the recipients of ‘care’, rather than the providers of it.

Second, excluding disabled parents from mainstream parenting agendas meansthat studies of disability and parenting have generally involved a search fordeficits in parents and/or negative outcomes in their children. Furthermore,they underline the idea that parental impairment – rather than social disablement– is the key variable of interest. The result is a literature that is not only oftenweak in understanding the importance of economic and social structures infacilitating parenting, but also separates and fragments the study of disabilityand parenting by looking at the issue in impairment-specific chunks (such asparents with multiple sclerosis, depressed parents, visually impaired parents). Itis a literature that is dominated both by clinical, or quasi-clinical, research designs,and by studies of particular ‘social problems’, again usually involving the welfareof children, which reflect more indirectly on the (quality of) parenting of disabledpeople. We review one such example – the construction of some disabledparents’ children as ‘young carers’ – in some detail, given the important role ithas played in driving forward policy, practice and research agendas in the pastdecade.

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We also look briefly at the place of parenting in the literature and politics ofthe disability movement itself. The emergence of parenting within the workand writings of the disability movement, and therefore the emergence of thedisabled parents’ movement itself, is intertwined with the development of anexplicitly feminist disability perspective. This particular perspective challengesthe marginalisation of issues important to disabled women within and withoutthe disability movement and its literature.

Third, the absence of disabled parents from mainstream parenting supportresearch agendas is consistent with a UK policy and practice framework that,despite trying to incorporate an understanding of the social context in whichparenting takes place, remains wedded to the idea that effective parenting restscentrally on the capacities and attributes of individual parents. An example ofthis is the tension with which parenting capacity is constructed in importantpolicy and practice documents, such as the Framework for the assessment of childrenin need and their families (DoH, DfEE and HO, 2000). This attachment toindividual capacity, we argue, is inconsistent with a social model approach todisability that sees parenting as a social role that disabled people can find difficultto access, and one where the support necessary for them to sustain occupationof that role is differentially available.

As its starting point, this chapter looks at recent mainstream research into parenting,and parenting support, in the UK, and at the absence of disabled parents from thisresearch. We contrast this with a review of key issues in the clinical literature ondisability and parenting, looking in particular at how the adoption of a medicalmodel approach has led researchers to ask very different questions about theparenting of people with different impairments. This is then followed by a review,not only of the explosion of interest in ‘young carers’ since the early 1990s, butalso of the critique made by authors (ourselves included) arguing for a reorientationof the issue towards one of parental support and independence.

The second half of the chapter situates parenting and disability issues withina broad and complex legislative and policy framework, governing, among otherthings, the relationship between the state and the family, and the delivery ofsupport for disabled people. It also highlights significant recent developments inthe growth of an active disabled parents’ movement in the UK, and in a growingrecognition of the parenting role of disabled people in policy and practice circles.The chapter ends with a brief discussion of some other key issues, including theimportance of gender in research on parenting and the development of inclusiveapproaches, not only to disability, but to parenting itself.

Disabled parents: invisibility and pathology

Parenting research: where are disabled parents?

Parents – or, more specifically, parenting – lie at the heart of many recent UKsocial policy initiatives. These include initiatives aimed at addressing educationalunderachievement, promoting social inclusion and reducing levels of juvenile

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crime and disorder (Lloyd, 1999). This is reflected in government policy andpractice in two ways. The first is the long-term aim of reducing the number ofchildren in poverty, through changes in benefits and in taxation systems – forinstance, increases in Child Benefit, targeting tax breaks at people with dependentchildren through the Working Families’ Tax Credit, the replacement of themarried person’s tax allowance with a children’s tax credit, and so on. Thesechanges represent an important recognition of the significance of materialsecurity to the wellbeing of children and in enabling parents to parent successfully.

In addition to this focus on poverty, however, is a second element of socialpolicy on parenting: the significant expansion of programmes and initiativescollected under the loose umbrella terms ‘parenting education’, ‘parentingsupport’ and ‘family support’. The focus of these interventions is extremelyvaried, from North American-developed behavioural modification programmes(Webster-Stratton, 1999), to a range of voluntary and statutory sector-led servicesaimed at supporting parents1. Furthermore, provision varies in terms of thefollowing:

• preferred format (for instance, group-based versus individual-based);• provider (from the statutory/voluntary sector, led by health/social care

professionals or volunteers, and so on);• target audience (for example, a universal focus on parents, or specifically

aimed at children of a certain age, parents of a certain gender or ethnicgroup).

There is also now a growing body of descriptive and evaluative work lookingat the effectiveness of family and parenting support initiatives2. Of particularimportance in this body of work are issues of access. For instance, it is widelyrecognised that existing initiatives have been largely aimed at mothers, and thatbarriers to the participation of fathers should be addressed (Smith, 1997; Mortley,1998; Webster-Stratton, 1999). In addition, the accessibility of parent supportmeasures for people from minority ethnic groups has also been called intoquestion (Webster-Stratton, 1999). Other studies highlight the particular supportissues for parents in various marginalised groups. For instance, in their reviewof support programmes for parents of teenagers, Roker and Coleman (1998)report service provision developments that aim to meet the specific needs ofgay and lesbian parents, lone parents, parents of adopted children, parents instepfamilies and parents from travelling communities. What is particularly strikingin this agenda is the absence of disabled parents, especially given the inclusionin discussions about service developments of parents of disabled children andparents in rural areas who are said to face additional transport problems (Rokerand Coleman, 1998).

This invisibility is illustrated further in other work on the provision ofparenting support. For example, in her review of the growing involvement ofstatutory and voluntary bodies in providing parenting education and training,Smith (1997) discusses the broader context in which parenting takes place. She

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talks about changes and challenges for parents and parenting in the 1990s,including issues such as sex on TV, the availability of drugs, concern aboutchildren and the environment, the impact of geographic mobility on supportfor parents, the smaller families from which parents themselves come, as well asthe increased prevalence of single parenting and reconstituted families. Smithalso examines structural factors, such as poverty, poor housing, unemploymentand family conflict, and the role they play in exacerbating challenges to parenting.In addition, she invokes developments in the promotion of children’s rights,parental responsibility and the legislative framework on children and the family,shifting attitudes towards fathers and fathering, cultural influences on childrearing, the links between parenting, family support and criminal behaviour inyoung people, and the balance (for women, at least) of work and family life.The invisibility of disabled parents from this panorama is again immediatelyapparent, despite the importance of most – if not all – of these issues to disabledparents themselves. Even when Smith discusses access issues, she does so in ageneric sense, for instance, when discussing whether support groups shouldlevy a charge, whether they take place in ‘ambient’ surroundings, whether theyshould be available only to those parents already tied into other supportmechanisms, and whether or not they have a crèche available for people withyoung children. She makes no specific mention of disability in terms of accessbarriers, but, rather, only in terms of the importance of making parents withlearning difficulties aware that they can cope with “the demands of the course”(Smith, 1997, p 28).

In sum, then, mainstream parent support provision, and the research literatureaccompanying it, is bereft of consideration of disabled parents as a group withparticular access issues. This is supported by evidence provided by the NationalFamily and Parenting Institute (NFPI) mapping exercise, which reported thatonly around one in five services made efforts to include disabled parents(Henricson et al, 2001).

Social and family policy research: where are disabled parents?

The past 30 years have been a time of great change in terms of the economicand social context in which families are formed and sustained. These changesinclude dramatic shifts in the nature of the labour market, the shrinkage oftraditional male manual employment, and the expansion of service sector jobs,many of which are filled by women looking to combine work with childcareresponsibilities. At the same time, a higher proportion of people are not havingchildren, while those that choose to are having them later in their lives and insmaller numbers (Ferri and Smith, 1996). Children are much more likely toexperience parental separation and divorce now than in previous decades. Forexample, approximately 25,400 couples divorced in 1961, compared to around155,000 in 1991. Lone-parent families constituted 9% of all families in 1971,but by 1994, this figure had risen to 21% (Oakley et al, 1998). It is currentlyestimated that around 28% of children will experience the divorce or separation

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of their parents before they are 16 years of age, although the picture iscomplicated further by the high level of remarriage and repartnering (Oliverand Sapey, 1999, p 78). Therefore, families are more likely to be smaller and tobe ‘atypical’; that is, they are increasingly unlikely to conform to the stereotypeof two married, co-resident parents, and are increasingly likely to involveunmarried parents, lone parents, step-parents and stepchildren, foster andadoptive parents/children, and even same-sex parents. In addition, the increaseddemand for flexibility in the labour market means that families are less likely tolive within established informal networks, and are more likely to be dispersedfrom available support (Harding, 1996).

These changes are extremely important in the context of how disabled parentsmanage the job of rearing children. This is particularly so given the increasingpolarisation of wealth and resources over this same time period, which has seena dramatic increase in the numbers of children living in poverty, as well as thegrowth in the number of two-wage and no-wage families, and the correspondingdecline of the single-wage family (Ferri and Smith, 1996). This polarisation ofwealth and the close association, not only between disability and poverty, butalso between poverty and single parenthood, constitute an important contextto this research. Of further significance is what some authors describe as a shifttowards parenting as a consumer choice, and away from parenting as a taken-for-granted social function and responsibility (Ferri and Smith, 1996, p 9). This hasimportant implications for the balance between parents and the state in rearingchildren. While legislation such as the 1989 Children Act seems to offeropportunities for parental support, it must be remembered that it was introducedagainst the background of a raft of social policies aimed at minimising the role(and responsibility) of the state, and reinforcing the self-reliance of individualsand their families (Harding, 1996). Indeed, it has been argued (Tunstill, 1997)that the ideology underpinning the 1989 Children Act and other family andchild welfare policy developments – that is, that children’s needs are best metwithin autonomous, and largely private, (nuclear) families – owes as much tothe concerns of ‘New Right’ authors about the breakdown of society as it doesto the aspirations of liberal social policy (see, for example, Morgan, 1995).

This increasing ‘privatisation’ of child rearing coincides with a greater focuson the qualities required to parent in the first place. Campion (1995) identifieskey historical, social and technological developments that have led to a greaterwillingness to scrutinise the parenting qualifications of various individuals andgroups. These include a greater awareness of children’s rights; the demands ofpreviously excluded groups (including disabled people) to have and raise children;the increasing divorce rate, which necessarily involves an assessment of whochildren should subsequently reside with; and advances in fertility treatmentsthat raise moral and ethical dilemmas – for instance, older mothers, lesbian andgay parents, and surrogacy.

However, conventional social policy research and analysis has been almostuniversally blind to the existence of disabled parents. When disability does getdiscussed, it is usually in the context of informal caring, and the degree to

6


which broader socioeconomic changes threaten the availability of women ascare givers (Harding, 1996). Correspondingly, various pieces of equalopportunities legislation (sex discrimination and equal pay legislation inparticular) are often cited (for example, Harding 1996) as significant in shapingdebates about family law, parenthood and domestic responsibilities. However,a legislative framework seeking to promote the equal opportunities of disabledpeople is seldom, if ever, seen as central to debates about parenting and thefamily. This highlights a broader invisibility of disability and parenting in socialand family policy. For example, De’Ath’s (1989) review of research concerningchildren and the family explores issues of step parenting, single parenting, childrenwho run away, and so on, but says nothing about disabled parents.

Finally, research into domestic work – whether carried out by children orparents – has seldom seen illness or disability as an important issue(notwithstanding the ‘young carers’ debate, which we review later). Researchinto children’s domestic work has generally been informed by a broader, feministliterature about gender and housework (see, for example, Oakley, 1976). Typically,it has focused on gender stereotyping and the choices that (implicitly non-disabled) parents make regarding their children’s socialisation (Zill and Peterson,1982; Bird and Ratcliff, 1990). Consequently, sociological interest in children’scontribution to domestic work has overwhelmingly focused on gender andsocialisation, with disabled parents once again overlooked (Morrow, 1996).

Substantial changes have taken place in recent decades in the size and shapeof families, as well as the economic and social framework in which they areformed and sustained. These changes are as relevant to disabled parents as theyare to non-disabled parents; in some cases, such as the increasing polarisation ofwealth, the increasing number of families with children in poverty, and theincreasingly dispersed nature of informal networks, the changes may beparticularly pertinent to disabled parents. However, conventional family policyand research have yet to consider parental disability (as opposed to childhooddisability) as a major issue, thereby contributing further to the relative invisibilityof disabled parents.

Deficits and (in)capacity in research on parenting and disability

We have already discussed the exclusion of disabled parents from the developingresearch literature on parenting support. That body of work locates parentingwithin what might be broadly called an ‘equal opportunities’ framework, withan emphasis on access and equity with regard to parenting support, and onbarriers to support that might exist for particular groups of parents. This issignificant: the absence of disabled parents in this literature only serves to isolatethem within an even longer tradition of ‘clinical’ work.

Pathology is the perspective typically adopted by researchers looking atparenting and disability from within clinical disciplines. That is, the (in)capacityof disabled parents, and the search for negative outcomes for children of disabledparents. Studies in this area indicate the degree to which clinical research on

7


parenting and disability has adopted negative and pathologising frames ofreference3.

Physical and sensory impairment and the impact on parenting

Antipathy towards disabled people having children has deep historical roots,finding its most violent expression in the murder of up to 200,000 disabledpeople in Nazi Germany. This atrocity was fuelled by the adoption of ‘eugenicist’theories by mainstream scientific communities in Europe and North Americain the first half of the 20th century (Burleigh, 1994), which emphasised thedanger to the health of the population as a whole of allowing ‘defectives’ toreproduce. The strength of such eugenicist thinking was also evident in thesubsequent restrictions on the reproductive rights of disabled people (includingforced sterilisation) practised in many countries in the second half of the 20thcentury. This antipathy towards disabled people having children was also apparentin academic publications. For example, less than 30 years ago, one bookcounselled:

In a young married couple, who want a child, pregnancy is not inadvisablewhere multiple sclerosis can be controlled…. [A]n abortion must be seriouslyconsidered where coping with the disease, the pregnancy and the family proveto be too much. (Heslinga et al, 1974, p 87)

The same book goes on to suggest that any disabled person’s wish to adoptchildren must be interpreted as fulfilling a need to “brighten up their drearylives” (Heslinga et al, 1974, p 178). Of course, what is absent from these extremeassertions is support (or the lack of it), and the role it plays in enabling disabledpeople to parent successfully. This forms a recurrent theme in our research.

The ambivalence towards the parenting of disabled people was apparent inresearch carried out by the Maternity Alliance (Goodman, 1994). This foundsignificant evidence that professionals continue to counsel and pressurise disabledwomen into avoiding pregnancy, or into choosing abortions on the basis ofanticipated difficulties with parenting.

Studies of the ‘impact’ of parental physical impairments on children inherentlypathologise the parenting provided by those parents, since they search for deficitsin parenting or family functioning. Studies focusing on the benefits to childrenof having disabled parents are seldom seen. One exception is a study by Reineltand Fried (cited in Kelley et al, 1997), in which mothers with multiple sclerosis(MS) described their children as independent, self-sufficient, empathetic, sensitiveand helpful, and thought their disability had little negative effect on their children.Despite such success, most mothers in that study reported facing scepticism ordiscrimination about their parenting capacity from both the medical professionand the general public.

Studies of parenting and physical impairments have also typically adoptedan implicitly ‘medical’ model of disability, with a range of problems in family

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life, including behavioural problems in children, parental divorce and educationalunderachievement, inappropriately ascribed to parental impairment. For instance,Jamison and Walker (1992) report the effects of parents’ chronic pain on thesocial and developmental problems in children. However, they neglect to lookat the support in managing pain that parents receive (or do not receive), andthe disabling response of others to parental pain. As Greer (1985, p 134) argues:

Since society has often been portrayed as viewing physical disability as bad, itis understandable that parents with disabilities might perceive any misbehaviouron the part of their children as a reflection of themselves.

Researchers have also attached importance to the issue of children’s adjustmentto parental disability (LeClere and Kowalewski, 1994), with a familiar medicalmodel approach to impairment and its direct causal relationship with negativechild outcomes. Aside from the shortcomings of this kind of approach, it sayslittle about the 80% of disabled parents, surveyed by the Maternity Alliance(1994), who chose to become parents as disabled people, rather than who becamedisabled following the birth of their children.

The literature raises two further important issues concerning parents withphysical impairments. The first of these is discipline. The assumption is oftenmade that lack of physical mobility will necessarily restrict the ability of parentsto discipline their children. This, it is argued, has long-term ramifications, first,with regard to child wellbeing, second, concerning the extra ‘burden’ placedon non-disabled partners, and finally, for public order. Greer (1985) is criticalof such narrow thinking. Not only is the environment in which parents promotethe safety and good behaviour of their children often ignored (for instance, theaffordability of stair safety-gates, the limited options for moving house thatdisabled people often have), but such an approach also lacks imagination on theissue of discipline itself. Greer points out that the problem is an overrelianceon the physical disciplining of children in our society, and not the physicalinability of some disabled parents fully to engage in it.

Second, research into physically disabled parents has placed great emphasison parenting as a set of tasks, from picking up toys and opening cans of bakedbeans, to changing nappies and engaging in ‘rough and tumble’ (Heslinga et al,1974). Consequently, fears about the quality of parenting are essentially fearsabout the inability of parents with physical impairments to carry out this rangeof tasks. Within this approach, the research raises such questions as ‘Can theparent do the things parents have to do?’, ‘And if not, what are the effects onthe child?’ (Greer, 1985). Absent is consideration of the relative accessibility ofthe environment in which parenting takes place; absent, also, is consideration ofthe availability of support (whether technological, financial, practical, emotional,and so on) that will compensate for those areas where physical difficulties exist.Disabled parents themselves have led the challenge to this assumption, placinggreater emphasis on the role of parents in providing love, support, guidance,

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leadership, organisation, and so on, rather than on the physical tasks associatedwith parenting:

[M]any of us find that, even while lying flat on our backs in hospital, we arethe ones who have to organise to keep the family together and cared for.(Morris, 1989, p 127)

This conceptual distinction between tasks associated with parenting, and thebroader role of ‘parent’, is an important theme in our research. Much of thesubstantive material presented hereafter is informed by an approach thatemphasises parenting as being essentially more about a role than about a seriesof discrete physical tasks.

Mental health impairments and the impact on parenting

Research into parenting and mental health has a long history, with interestfocused mainly on motherhood, especially in the North American literature(Oyserman et al, 1994; Mowbray et al, 1995; White et al, 1995; Zeitz, 1995).While much clinical research into parenting and disability has involved thesearch for deficits (as well as for more general negative impacts on children’swellbeing), the focus of the literature has linked parental mental health muchmore directly with child deprivation, neglect and abuse. The roots of thisassociation can be traced back to early studies of maternal deprivation and tothe influence of attachment theory4 in highlighting the ‘dangers’ of ‘mentallyill’ mothers (for a review, see White, 1996). Indeed, a concern that the childrenof ‘mentally ill’ parents have a greater likelihood of developing mental healthimpairments of their own later in life continues to inform current policy andpractice. For instance, the current National strategy for carers (DoH, 2000a)highlights the risk to children of ‘mentally ill’ parents of developing mentalhealth impairments of their own.

Of particular significance are a number of popular studies that have shownan apparent overrepresentation of parental mental health impairments in casesof fatal child abuse. For instance, Falkov (1996) found parental ‘psychiatricdisorder’ to be present in 32 of the 100 fatal child abuse cases he studied.Similarly, James (1994) found that out of 30 fatal child abuse cases, six involvedparental mental health impairments. However, as Stanley and Penhale (1999)rightly point out, what these studies show is that most child abuse fatalitiesinvolve families without parental mental health impairments.

The mental health impairments of parents continue to feature prominentlyin research and policy concerning parenting and the family. For example, theinfluential Department of Health Child Protection Research Programme ofthe early 1990s drew attention to the significance of a lack of parental warmthand high levels of criticism as risk factors for child neglect. These were implicitlyand explicitly associated with parental (or typically maternal) depression and

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anxiety (Dartington Social Research Unit, 1995). Parton argues that a keyoutcome of the child protection research programme was the recognition that:

with the exception of a few severe assaults and some sexual maltreatment,long-term difficulties for children seldom follow from a single abusive eventor incident – rather they are more likely to be a consequence of living in anunfavourable environment, particularly one which is low in warmth and high incriticism. (Parton, 1997, p 6, emphasis in original)

Research into the reasons why children enter the care system also shows astrong association with depression and other mental health impairments inparents (Bebbington and Miles, 1989). Similarly, the relationship between childabuse and maternal depression is a well-researched area. Of particular importancehere is work of Sheppard (1997, 2002). In one study, in which 116 mothers ofchildren on child protection registers were interviewed, Sheppard found that:

The really marked difference between families with abused children and thosenot abused was where maternal depression was present. (1997, p 97)

Sheppard’s is an important study, in that it acknowledges the importance ofaddressing depression among mothers of children on child protection registers.It also acknowledges the disabling effect that child protection proceedings canhave on the capacity of parents to fulfil their parenting responsibilities:

[T]he effects of these [child protection] investigations on women alreadywracked by the effects of depression may be even more severe, and in somecircumstances inhibit the very parenting capacities which practitioners areultimately attempting to encourage. (Sheppard, 1997, p 105)

Yet, as with much of the research into parenting and disability generally, whatevidence there is suggests that one can only understand the impact of mentalhealth impairments on parenting within the context of available support, andthe broader socioeconomic disadvantages that face people with mental healthimpairments. For example, Stanley and Penhale (1999) found that nine out of13 mothers with severe mental health impairments (whose children were thesubjects of child protection proceedings) had no access to a mental healthsocial worker. Furthermore, seven had no access to community psychiatricnurse support. This indicates that, when statutory authorities register childprotection concerns in families with parents with mental health impairments,support for parents is often a secondary concern.

This is compounded by the fact that formal services available to people withmental health difficulties have traditionally neglected any parentingresponsibilities once people have entered the system of psychiatric services (DeChillo et al, 1987; Cottrell, 1989; Gross, 1989). A study by Coleman and Cassell(1994) found that, while family composition was typically recorded in the case

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notes of adults admitted to psychiatric hospitals, this usually involved informationabout the family of origin of the patient. This is evidence not only of the way inwhich disabled people are constructed essentially as recipients of care and support,but also of how their impairments are constructed in terms of their ownrelationship as children to their parents and family circumstances. Furthermore,research suggests that the parenting responsibilities of mental health serviceusers will be noted only in those cases where social services are involved. Whatthis indicates is that, for services to take an interest in service users as parents,they need to be identified in some way as ‘failing’ parents, or as having children‘at risk’ (Hawes and Cottrell, 1999). Hawes and Cottrell (1999) point out thatno mention is made of childcare in the Health of the nation outcome scales (Winget al, 1996). Similarly, in a survey of one UK health region, Sayce (1999) foundthat social service records provided no space to note the existence of the childrenof adult mental health service users; there was space, however, to recordinformation concerning ‘carers’.

More recently, researchers have begun to adopt a more holistic approach tothe parental responsibilities of mental health service users. For instance, Wangand Goldschmidt (1994) sought the experiences of professional interventionson the part of their sample: newly admitted Danish psychiatric patients withyoung children. Although a key part of the study remained the presence orotherwise of mental health impairments in the children, this research at leastlocated the ‘problem’ in terms of the availability of support, and in terms ofinterventions that might enable and sustain family relationships rather thanundermine them. Also, while parenting and mental health remains anoverwhelmingly clinical research area, the social and support context in whichpeople parent with mental health impairments is receiving more attention (fora review, see Oyserman et al, 1994). In the UK, Carlisle (1998) also reported ontwo modest projects that were examining the increasing recognition of parentalresponsibilities of women with mental health impairments, research thatcontinues to highlight the health services’ lack of awareness concerning thepresence of children in the families of their patients. Researchers are nowdiscussing the close and reciprocal relationship between parenting and mentalhealth, especially in the context of the extra anxiety generated by having tomake arrangements for children while being in receipt of inpatient psychiatrictreatment (Coleman and Cassell, 1994). Other researchers are focusing on thenegative impact that fear of losing one’s children can have on mental health(Sayce, 1999).

Another important issue when looking at parenting and mental health is thepowerful role that adult psychiatry plays in the UK’s child protection system(Appleby and Dickens, 1993; Reder and Lucey, 1995; Reder and Duncan, 1997,1999). Researchers in this area point to the authority afforded psychiatrists indiagnosing mental illness, and the weight that their diagnoses carry in childprotection proceedings. Reder and Duncan argue, for example, that professionalsshould be aware that, if children are at risk in some way because of parentalmental health impairments, then they are at risk “from their parent’s behaviour,

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not from their diagnosis” (1999, p 148). In addition, Reder and Lucey haveargued that the individual focus of psychiatric diagnosis and intervention meansthat “the interpersonal contributions to, or consequences of, the index patient’sproblems receive comparatively less interest” (1997, p 37). In other words, themedical care that parents with mental health impairments encounter is likely tobe focused on their needs as individual patients, and not on their support needsas people with caring responsibilities. The stigma associated with mental healthimpairments, the often deeply personal and sensitive issues that underpin it,and the importance of confidentiality in medical relationships, make itincreasingly likely that parents with mental health impairments will be ‘treated’in isolation from their broader family context.

As we have seen, the literature on parenting and mental health has much incommon with the wider clinical research literature on parenting and disability.The focus is on the impaired capacity of parents to parent, and on the searchfor negative long-term outcomes for children of parents with mental healthimpairments. In addition, parenting and mental health are linked very closelywith the risk of neglect and abuse (see, for example, Sheppard, 1997), while thecontext of available support is generally ignored, both by researchers and byprofessionals interacting with ‘patients’ in a clinical setting.

Learning disabilities and the impact on parenting

The origins of research into the parenting of people with learning disabilitieslie in eugenics, and in a concern for the quality of the ‘population stock’ (Boothand Booth, 1993a, 1993b, 1994a, 1994b), as well as a persistent concern withcontrolling fertility, particularly that of young disabled women (Newbrough,1985). Indeed, the involuntary sterilisation of disabled people, and people withlearning disabilities in particular, has been a common practice throughout mostof the 20th century (Gilhool and Gran, 1985; Begum, 1996).

Even progressive campaigners on family planning in the first half of the 20thcentury were clear about the need for:

the compulsory sterilisation not only of the insane and feeble minded, but ofrevolutionaries, half-castes, the deaf, the dumb, the blind and anyone else whomight threaten the vigour of the race. (Campion, 1995, p 131)

Several researchers have pointed to the subsequent replacement of a eugenicistagenda primarily by a concern with the likelihood of children inheriting learningdisabilities from their parent(s), and secondarily by a focus on risk and on childprotection (for a review, see Andron and Tymchuk, 1987). Research adopting asocial model perspective on the parenting of people with learning disabilitieshas shown, however, that these parents are subject to more stringent criteriathan non-disabled parents regarding what constitutes ‘good enough parenting’.Intelligence Quotient (IQ) has been used as a spurious proxy for the quality ofparenting that people with learning disabilities can provide (Dowdney and

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Skuse, 1993; Booth and Booth, 1994a), but so too have ‘common’ aspects ofparenting, such as minor childhood injuries and the physical punishment ofchildren, which are more likely to be seen as evidence of poor parenting on thepart of learning-disabled parents than of the population of parents as a whole(Andron and Tymchuk, 1987). Furthermore, studies have often focused onsingle mothers, raising the question as to whether deficits identified are theproduct of learning disabilities, or of the lack of support available to them assingle parents. They have also failed to acknowledge that many parents withlearning disabilities will have grown up in institutional settings and may thereforehave lacked appropriate parental role models, and will have been excluded fromthe usual transmission of parenting skills and techniques within families (Gath,1988).

In addition, there is often an unnecessary link made between the skills lackingin parents with learning disabilities and the quality of parenting they give. Forexample, the consequence of an inability to read and write may be the failureto respond to official correspondence (concerning immunisation, school events,and so on). This can then be reinterpreted as a problem of parental motivation,rather than the inadequate ways in which the NHS and schools choose tocommunicate with parents (Booth and Booth, 1993a). Indeed, the viewsexpressed by disabled parents in our study indicate that parents with a widevariety of impairments (and not just learning disabilities) experience this negativereinterpretation of their parenting behaviour in the light of assumptions aboutparenting (in)capacity. Parents with learning disabilities are also significantlyoverrepresented in child protection figures. For example, the Social ServicesInspectorate (SSI) inspection of services for disabled parents found that childprotection concerns had been raised in almost two thirds of cases involvingparental learning disabilities, compared to a figure of around 20% for the groupof disabled parents as a whole (DoH, 2000b).

In sum, the parenting of people with learning disabilities is conventionallyseen as problematic, the common assumption being that not only will childrenbe at significant risk of harm, but that the root cause of the problem is the lackof the skill and good judgement needed for effective parenting. This helps toexplain why the issue of baby care dominates the research literature, and perhapsalso the decision to take the infants of learning-disabled mothers into care.

The parenting of disabled people as a social problem:the case of ‘young carers’

An issue that has thrust the parenting of disabled people into the academic andpolicy limelight over the past decade or so is one of ‘young carers’; that is,children ‘caring’ for ill and disabled family members (usually their parent orparents). The origins of the research on which this book is based lie partly inour concern with the appropriateness of constructing children of disabledparents in this way. (Indeed, we have devoted Chapter Four to children’sinvolvement in domestic and ‘caring’ activity.) Our central concern is to explore

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the factors that lead some disabled parents to require inappropriate levels ofassistance from their children. The question to be asked, then, is no longer“How can children labelled ‘young carers’ best be supported in their ‘caring’role?”, but rather, “What kind of support do disabled parents need that willenable them not to rely on children for assistance?”.

‘Young carers’ emerged as a new welfare category in the late 1980s and early1990s. Their arrival was the product of increasing awareness, particularly withinthe voluntary sector, of the inappropriate roles that some children appeared tobe taking on. This was combined with the publication of various academic andnon-academic papers, each seeking to do a number of things:

• to estimate the numbers of ‘young carers’ (Page, 1988; O’Neil and Platt,1992; Walker, 1996);

• to present qualitative data about the lives of children ‘caring’ for other familymembers (Aldridge and Becker, 1993a, 1993b, 1993c, 1994);

• to evaluate the first wave of dedicated ‘young carer’ support projects(Bilsborrow, 1992; Meredith, 1992; Mahon and Higgins, 1995);

• to raise awareness about this group of children among professionals (Fallon,1990; Dearden et al, 1994).

Of particular – and continuing – importance was the work of the Young CarerResearch Group (YCRG) at Loughborough University, which was instrumentalin raising the profile of ‘young carers’ on policy and practice agendas, and infurther developing the research literature on ‘young carers’ to include morequantitative work on the characteristics of those children to whom existing‘young carer’ services provide support (Dearden and Becker, 1995, 1998). Moreresearchers have since begun to publish work on ‘young carers’, whether fromthe perspective of a particular local authority (Munoz, 1998), from the perspectiveof ‘ex-young carers’ (Frank et al, 1999), or from the perspective of Asian ‘youngcarers’ (Shah and Hatton, 1999). More recently, guidelines for good practicewith ‘young carers’ have been produced (Frank, 2002).

The influence of this body of work in shaping the provision of support forchildren with disabled parents, and in structuring the issue as one of ‘children’srights/carer’s rights’, cannot be overstated. There are now well over 100 dedicated‘young carer’ services in the UK, provided by social services departments, andby a range of organisations in the voluntary sector. The place of ‘young carers’is also enshrined in legislation (the 1996 Carers Act) and in various policy andpractice documents, such as the National strategy for carers (DoH, 2000a) and theFramework for the assessment of children in need and their families (DoH, DfEE andHO, 2000). In addition, ‘young carer’ has entered not only the lexicon ofwelfare professionals, but also that of the public consciousness, with ‘youngcarers’ frequently included in popular/populist media occasions such as theChildren of Courage Awards – some local agencies even run Young Carer of theYear Awards.

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By the early 1990s, the growing profile of informal carers as a cornerstoneof community care policy and practice had already caused disquiet within thedisability movement. Concern was expressed that a community careinfrastructure, heavily reliant on unpaid informal care, was not consistent withthe campaign by the disability movement for control over the way in whichpersonal assistance was provided. Inevitably, then, the growing move to constructthe children of some disabled parents as ‘young carers’ was not well received bydisabled parents and their allies, especially given the use of emotive terms suchas ‘punishment’ (Aldridge and Becker, 1993c), ‘abuse’ (Aldridge and Becker,1993d) and ‘curse’ (Siddall, 1994) in describing the experience of ‘young carers’.At the same time as the ‘young carer’ literature was developing, a number ofwriters began developing what might be called a ‘disability perspective’5. Theychallenged the theoretical, empirical and political basis of this growing academicand policy interest in ‘young carers’. In particular, they sought to highlight thepotential for disempowerment when services take the ‘caring’ role of childrenat face value and seek to support children in that role, without critical scrutinyof the support that their parents would find helpful in preventing the need forthat assistance in the first place. The common purpose of these researchers hasbeen to reframe the issue of ‘young carers’ as one of parental independence andsupport, and as one of equal opportunities for disabled people in their parentingrole.

More recent publications articulating a children’s rights perspective on ‘youngcaring’ have adopted a more balanced approach. Terms such as ‘holistic support’or ‘family-centred support’ are increasingly replacing an emphasis on children’srights as ‘carers’ and the more emotive language highlighted above. For instance,such researchers outline a ‘family approach’ that acknowledges the significanceof the lack of services in generating the need for children to act as ‘carers’ in thefirst place, and:

highlights and promotes the needs of all family members where there is anillness or disability present. (Dearden and Becker, 2001, p 226)

However, this increasingly holistic approach remains based on:

• an understanding of the ‘care’ needs of disabled parents that is heavily rootedin the medical model of disability;

• an emphasis on parental impairment as the trigger for children’s involvementin ‘caring’ (Aldridge and Becker, 1999);

• a continuing focus on the parenting of disabled people through the lens of‘capacity’ (Dearden and Becker, 2001).

An important element of some discussions of ‘young caring’ is their referenceto the evidence for role reversal or role change; that is, where a child takes onresponsibility for a parent and/or other members of the family as if they were the

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parent. For example, Handley et al interviewed children of parents with mentalhealth impairments, and found that

in some of the children’s stories there was evidence of ‘parentification’ and‘adultification’. (2001, pp 225-6)

However, Handley et al do not expand on the possible or expected outcomesfrom this process. Barnett and Parker (1998) reviewed the literature onparentification, and pointed out that it can often be used in a non-rigorousway, while retaining an assumption of permanence, centrality and pathology.Indeed, Aldridge and Becker have borrowed from the idea of parentification intheir later work, but couch it in terms of the interdependence of parents andchildren in families where children are assisting parents:

The reciprocal and interdependent nature of the caring relationship enablesthe family to survive as a unit. It allows young carers and their families to goon living, loving and working together as a family. (Aldridge and Becker,1999, p 313)

But does theorising the involvement of children in inappropriate ‘caring’ asone of parentification or role swapping, or even of interdependence, help usaddress the issue of parental support and the equal opportunities of disabledadults in undertaking parenting with choices, control and independence? Inthis sense, we reiterate our conceptual distinction between the parenting tasksthat parents actually do, and the parenting role itself embedded in relationshipsof love, protection, support, and so on. The fact that children may get involvedin the tasks of parenting should not mean that the parents’ role is compromised,especially if policy and practice responses are to underpin parents’ choicesconcerning receipt of assistance.

In summary, then, ‘young caring’ has been a bone of contention betweenacademics, professionals and disabled people since the creation, over a decadeago, of a service infrastructure aimed at supporting ‘young carers’. The influenceof the publications and awareness-raising activities of the YCRG has beensignificant, especially in constructing a particular way of seeing the issues in‘children’s rights’ terms. From this have emerged policy and legislation rootedin the recognition of the role of children who take on ‘caring’ roles and inpromoting their interests as child ‘carers’.

These developments, and the growth of a disability perspective on ‘youngcaring’, represent the political and theoretical background of this book. InAppendix One, we outline how the ‘young carer’ literature – and the challengeof a social model approach – informed the design of this study and of thematerials developed for our data collection.

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Parenting within the disability movement

So far, we have examined the presence and absence of disabled parents invarious contexts and literatures. In this final part, we look briefly at the placeof parenting within the disability movement itself. We argue that disabledwriters have been slow to recognise the parental responsibilities shared bymany disabled people, illustrated by their absence from various studies, includingthose on the effectiveness of independent living and direct payments schemes(Brindle, 1995), and on the experiences of disabled women using primary-care services (Begum, 1996). This is despite the fact that some of individualswhose stories feature in evaluations of direct payments happen to be parents,and are quick to point to the benefits for the whole family of the provision ofpersonal assistance through direct payments (Hasler et al, 1999).

Until quite recently, the only exception to the conspicuous absence of disabledparents from the literature of the disability movement was the work of disabledfeminists, and especially that of Morris (1989, 1991, 1992). For her, a disabilityrights perspective is indistinguishable from a feminist perspective, given thedual oppression of disabled women, on the one hand as disabled, and on theother as women (Morris, 1992). Inevitably, in the construction of a feministdisability perspective, Morris tackles some of the issues we have discussed (themedicalisation of disabled people, eugenics and fertility, the reproductive rightsof disabled women, and the way in which impairment is used to deprive disabledwomen of contact with, and custody of, their children). In addition, her writinghighlights the ways in which inadequate housing and social support, as well asphysical and attitudinal barriers, can work against disabled women in bringingup their children.

More recently, other disabled authors have developed the themes ofmotherhood and disability in their writings, either as the product of researchwith disabled mothers (Wates, 1997) or as personal accounts of motherhood(see especially, Finger, 1990; Mason, 1992; Wates and Jade, 1999). Wates (1997)explores parenting from the perspective of 21 disabled mothers. She examinesthe tensions that exist for disabled parents, especially when balancing therecognition that there are additional barriers to overcome against the desire toappear ‘normal’ and to avoid stigmatising intervention from welfare services.

The association is easily made between being seen as different and being seenas problematic. And so, from a disabled parent’s point of view, doing one’sbest to appear normal may seem like the safest route to a family life free fromunwelcome intervention. (Wates, 1997, p 14)

Wates also discusses some of the key theoretical and empirical issues that oughtto lie at the heart of parenting and disability research. These include theimportance, in terms of the attitudes that disabled people are likely to facewhen it comes to having children, of having been disabled from birth orchildhood, compared to being impaired in adulthood. They also include the

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importance of visible – as against invisible – impairments (and the way inwhich visibility shapes disabling encounters), and the contrast between morestable and predictable impairments on the one hand, and progressive impairmentson the other (in terms of changing assistance requirements, the capacity offormal services to respond, and so on). Importantly, Wates also locates heranalysis in a critique of the assumptions that are made about disabled people asbeing inevitably the passive recipients of care, and therefore implicitly not ascarers of other people:

To be disabled and a parent counters the assumptions of emotional dependenceand passivity which are often made about disabled people. (Wates, 1997, p 15)

This also echoes the feminist perspective developed by Morris in identifyingbarriers to participation in parenting as particularly important for disabledwomen, given dominant social norms that see caring roles in general, andchildcaring roles in particular, as an important element of adult, female identity.Barron (1997) makes the same point in her work on the transition of disabledadolescent girls into adulthood:

Motherhood is in our culture viewed as an essential part of womanhood. It isan important part of what constitutes a ‘real’ woman. (Barron, 1997, p 232)

It is clear that, despite the relatively marginal place of parenting in disabilitythinking, disabled writers are beginning to assert themselves as parents, and togenerate a social model literature on parenting, often informed by a broaderfeminist perspective6.

However, significant gaps remain to be filled in this ever-developing literature.Importantly, the more or less explicit association of parenting issues and feminismwithin the disability movement’s work on parenting is significant, yet leaves atheoretical and empirical space for exploring disability and fatherhood. (Issuesof gender, disability and parenting are discussed later in this book.) It is alsoimportant to acknowledge the importance of inclusiveness in the developmentof the parenting and disability literature. The disability movement has beenactive in debating the adequacy of the social model in fully encapsulating theexperiences of people with learning disabilities, people with mental healthimpairments, and so on (for instance, Beresford, 2000). However, while themainstream literature on parenting is beginning to acknowledge diversity interms of parenting (for example, gay and lesbian parents, adoptive and fosterparents), work on parenting from the disability movement has yet to broadenits horizons to incorporate fully such diversity.

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Summary

Historically, disability and parenting have been situated within and between arange of academic and policy literatures. These have tended, more or lessexplicitly, either to ignore the parenting responsibilities of disabled people, orto construct it in various ways as a social problem. In particular, the absence ofdisabled parents from mainstream parenting policy and research agendas hasserved to isolate them further within studies adopting a clinical gaze, or in‘problematising’ the parenting of disabled people. Clearly lacking from thedebate has been a coherent theoretical and empirical framework for exploringthe parenting of disabled people from within a social model perspective, onethat is interested in identifying the barriers to equal opportunities in parentingexperienced by disabled people. We have seen that researchers from within thedisability movement have now begun to establish such a framework.

We turn now to the UK legislative and policy context informing practicewith disabled parents and their families.

The legislative and policy context

It is a fact that very few areas of legislation, public policy and practice do notimpinge on the way in which families are established and maintained, and theway in which the needs of children and parents are supported or undermined.These include employment law, education policy and practice, tax, income andbenefits policies, and macro-economic policies, among other things. In a studyof parenting and disability, other areas of legislation and policy also have particularprominence, such as health and community care, transport, housing, and so on.

It is clearly not possible to contextualise our research with reference to allthese areas of public policy. What follows, then, is a brief overview of thelegislative and policy context most directly relevant to disabled parents – especially,the important twin frameworks of the 1989 Children Act and the 1990 NHSand Community Care Act7. The inherent opportunities and problems in thesepolicy frameworks are highlighted with regard to enabling disabled adults tofulfil their parenting responsibilities, and we question the extent to whichestablished ways of conceptualising the needs and welfare of children (as well asparents) can mesh neatly with a social model of disability. The more recentlegislative and policy developments in relation to disabled parents are also brieflydiscussed8.

Child welfare legislation

The 1989 Children Act offers a potentially enabling way forward in supportingdisabled parents. The underlying principle of the Act is that the family home isthe best place for children’s needs to be met (DoH, 1994), and that:

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when intra-familial supports to the child fail or are absent to the detrimentof that child, the state has a duty to offer aid to the family, or directly to thechild to promote his or her welfare. However, the state then has a duty towithdraw when parents are once more able to discharge their responsibilitiesto their children. (Aldgate et al, 1994, p 1)

The emphasis, then, is on the state as a backstop, and on intervention that actsto promote parental autonomy and independence rather than to provide areplacement for that role. The Act also allows services to be provided to othermembers of a child’s family, should this be deemed the best way of meeting thechild’s needs. This is potentially good news for disabled parents, particularlygiven the emphasis of the Children Act on balancing family support and childprotection priorities and activities.

However, we must be cautious about the capacity of the Children Act torespond adequately to the support needs of disabled parents. First, ampleevidence exists concerning the way in which the principles of the Act havebeen undermined by the lack of resources necessary to support fully families inneed. It is particularly important to recognise that the political consensus overthose parts of the Act that were about parental responsibility was not reflectedin political consensus about the material and structural resources necessary toparent successfully (Parton, 1991). Hill and Aldgate (1996) argue that theChildren Act was introduced at a time of retreat from universal welfare provision,and towards targeted help to those deemed ‘in need’. This has meant that thediscretion of local authorities to set thresholds as to which children in need(and at what level of need) to provide support for, has left a question markhanging over the success of the Act in redistributing the balance between childprotection and family support. Similarly, Tunstill (1997) points out that, whilethe Children Act offers a good framework for the provision of family support,its introduction at a time when the role of the state in supporting families wasideologically unpopular means that family support aspects of the Act havesubsequently been squeezed.

These issues form the basis of a common concern shared by many disabledparents: that, while it is extremely difficult to access services that support effectiveparenting (on grounds of budgetary constraints, the division of adult and childsocial work, and so on), it is very easy to become a target of social work withregard to the adequacy of parenting and the perceived risk of child neglect andsignificant harm. Other researchers have raised similar concerns, for instanceregarding the likelihood that the children of mothers with mental healthdifficulties will become targets of child protection proceedings. White pointsout that in many cases:

it appears families receive a child protection package or they receive nothing.(1996, p 82)

21


Green et al (1997) came to a similar conclusion, having interviewed familieswhere a mother was in contact with mental health services, as well as professionalsworking with them. They reported that the professionals concerned felt anincentive to describe family situations in child protection terms so that theycould meet thresholds for service provision. The consequences of this weretwofold: first, for the relationship between professionals, and second, for parentswith mental health impairments:

This placed mothers in a situation where they were reluctant to confide fully inthe professionals and in a relationship which always had an element ofambivalence … it was the degree of risk, rather than the degree of need whichseemed to determine the threshold to services. It is this issue of professionalculture which, together with the lack of resources, is the primary barrier to theprovision of an effective preventative service. (Green et al, 1997, p 65)

This echoes work predating the Children Act that found that the reception ofchildren into care – as opposed to the provision of family support – was oftenthe only option offered to vulnerable families (Packman et al, 1986). It is alsosupported by the experiences of disabled parents who have been offered fostercare for their children, but little or no help in parenting their children themselves(Maternity Alliance, 1994).

Most importantly, the fundamental attachment to parental competence as anindividual attribute or skill permeates the thinking of successive governmentson parenting. In particular, the philosophical assumptions behind the 1989Children Act are in many ways incongruent with a social model of disability.For instance, the test of significant harm is not particularly sensitive to theposition that disabled parents might find themselves in when trying to care for,and meet the needs of, their children. Firstly, it is rooted in the assumption thatharm is the direct result of actions (or inaction) on the part of parents (Hardiker,1996), as opposed to broader socioeconomic factors.

Second, decisions about care proceedings involve assessing “the capability ofparents or others of meeting the child’s needs” (Hardiker, 1996, p 108). Sayce(1999) makes the same point when pointing to the ways in which the legalsystem can discriminate against disabled people, and deny them opportunitiesin parenting, by relying too heavily on the assumption that a diagnosis necessarilyimpairs parenting ability, and therefore sets the interests of the parent and childartificially apart.

Third, the assessment of harm against a criterion of the health and developmentthat could reasonably be expected of a “similar child” (Hardiker, 1996, p 110)emphasises individual capacities above social context:

Reasonable parents do not suffer disability, any more than they suffer fromalcoholism, drug addiction or poverty. All parents come to the judgementseat on an equal footing, however unequal they are in the world outside thecourt. (Freeman, 1990, p 152, cited in Hardiker, 1996, p 111)

22


This implicitly assumes that parental ability is a product of the individual, anddoes not situate parenting within broader parameters of exclusion and socialdisablement. It will come as no surprise, then, to know that remedies for theperceived shortcomings of parenting focus on a model of individual ability ordeficit (a direct parallel to the medical model). Consequently, they focus onways of changing parents (parenting classes, for instance) far more than onbarriers to effective and successful parenting. Similarly, Tunstill argues thatefforts to implement family support in the wake of the Children Act have beenundermined by the assumption that families should provide – rather than receive– support. This is a view:

dependent on a re-invention of the normal family with worrying implicationsfor those who cannot or will not conform to the norm. (Tunstill, 1997, p 42)

In addition, the filter of ‘children in need’ as an administrative category, and theinevitable development of hierarchies of access to services in the context ofscarce resources (Tunstill, 1996), have important implications for the ability ofdisabled parents to access support. In particular, disabled parents have arguedthat, in order to access support, their requirement to collude with theidentification of their children as ‘children in need’ is a significant barrier.

The most important recent development in child welfare policy and practiceis the implementation of the Framework for the assessment of children in need andtheir families (DoH, DfEE and HO, 2000, and hereafter referred to as theFramework). This policy development emerged from a growing consensusthat, throughout the 1990s, child protection proceedings had continued todominate social services activity with families, to the detriment of family supportservices promoted in section 17 of the 1989 Children Act. This very significantfinding was common to a number of studies (especially, Gibbons et al, 1995;Thoburn et al, 1995) carried out under the Child Protection research programmefunded by the Department of Health, and published as an overview documentknown as ‘The Blue Book’ (Dartington Social Research Unit, 1995).

Importantly, the Framework rests on a particular theoretical approach toexamining the constitution of parenting, and to the place of parenting withina number of domains, which permeates current government thinking on familyand social policy. The intellectual and theoretical tradition on which policy hasincreasingly been built is that of an ‘ecological’ approach to parenting, whichtraces its development to the work of Bronfenbrenner (1979) and Belsky andcolleagues (Belsky et al, 1984; Vondra and Belsky, 1993). An ecological perspectiveviews parenting as a set of activities influenced by three ‘domains’:

• the developmental needs of the child;• the capacities and personal resources of parents in meeting those needs;• the wider social and economic context in which parents operate.

23


This way of looking at parenting is of potentially great significance for policyand practice in the area of disabled parents, as it draws our focus towards structuralfactors (poverty, inaccessible housing and transport, and so on) as well as towardsthe individual strengths of parents themselves. It therefore offers the opportunityfor looking at the barriers and difficulties faced by parents rather thanautomatically assuming that parenting deficits are the responsibility of parentsthemselves.

However, those implementing the Framework have to find ways of resolvingfundamental tensions between these competing conceptions of parental activity.These tensions can be traced back to the theoretical approach to parentingitself embodied in ecological perspectives, and in particular to assumptionsmade about the relationship between impairment and ‘poor parenting’. Forexample:

It is unlikely that an individual who is caught up with his or her ownpsychological concerns will have the ability to decenter and take the perspectiveof a dependent infant. Without the psychological resources to understand,and consequently tolerate, the daily demands and frustrations of an infant oryoung child (let alone a teenager), a parent will be hard pressed to demonstratethe patience, sensitivity and responsiveness that effective parenting requires.(Vondra and Belsky, 1993, p 5)

Our argument is that this attachment to the importance of parenting ‘capacity’adopts an explicitly medical model approach to disability that is filteredthroughout the Framework itself , as well as to commentary on itsimplementation. For instance, in their paper on the implications of theFramework for learning-disabled parents, Cotson et al (2001) recognise theimportance of parental support. However, they also place great stress on theimportance of such parents demonstrating their capacity for adapting andlearning quickly enough to meet the developmental needs of their children:

While the learning of new skills may be possible, a crucial issue is whether therate of learning can be fast enough. Therefore, when assessing whether or notthe child’s developmental needs are being responded to, or could be respondedto, by parents, it is important to identify whether the parents are learning fastenough to be able to adapt to their child’s developmental progress. (Cotsonet al, 2001, p 300)

Many parents with mild or moderate learning disabilities will, of course, fail toreceive support from adult services, as their support needs as individuals oftenfall below ever-tighter eligibility thresholds. They will frequently not have thelong-term support necessary for them to demonstrate their effectiveness as aparent, and will often be trying to do so under the cloud of ongoing childprotection proceedings. In such circumstances, parents may quite rightly feelas though they have been set up to fail. This is particularly important given

24


current government targets of increasing the number of children adopted aswell as the speed at which adoption takes place. It is clear, then, that a lotdepends on the way in which parenting capacity is assessed as the Framework isput into operation, and on how the inherent tension between medical andsocial model approaches to parenting is played out.

Community care legislation

The key event in the construction of the current adult community care systemwas the publication of the Griffiths Report, Community care: Agenda for action(Griffiths, 1988). This report sought to clarify the roles and responsibilities ofvarious agencies with regard to the ‘care’ needs of elderly people and disabledadults. Its recommendations – that local authorities should take the lead inassessing need, and in commissioning its provision from a range of (increasinglyprivate-sector) providers – were largely accepted by the government andenshrined in the 1990 NHS and Community Care Act. Disabled people donot enjoy particularly extensive rights under the auspices of this legislation,and are essentially limited to the requirement that local authorities assess needas well as record unmet need (DoH, 1991a, 1991b). The obligation on localauthorities to meet need is less clear given the resource constraints within whichthey operate, and the qualified backing subsequently given by the courts intaking resources into account when providing services (Drewett, 1999). Inaddition, the impetus for change in the way in which community care isorganised and provided originated in part from a desire to minimise the cost ofsuch ‘care’ to the state, and to emphasise reliance on the family as the first placeto which ‘dependent’ people should turn (Borsay, 1997).

The development of current community care arrangements runs parallel tothe growth of a disability movement increasingly critical of the traditional, top-down, dependence-promoting way their needs have been assessed and (not)met (Priestley, 1998). This critique of welfare production has gone hand inhand with the development of the social model of disability, which emphasisesthe essentially social nature of disablement (in the design of buildings, workplaces,housing and vehicles, and in prejudicial attitudes) as opposed to the traditionalcharacterisation of disability as resulting from bodily impairment9. Thistheoretical challenge to medicalised definitions of disability necessarily led to adifferent vision of the role of the state in supporting disabled people. In particular,an alternative discourse developed, emphasising the provision of support todisabled people in ways that promote rather than inhibit independence, andthat facilitate control of assistance by disabled people themselves (Morris, 1993a,1993b).

The importance of the social model of disability for community care policyand practice has steadily grown, and has been encompassed most clearly in thenew raft of disability legislation introduced in the 1990s and 2000s. Of particularimportance here are the 1995 Disability Discrimination Act and the 1996

25


Community Care (Direct Payments) Act. The former Act represents an attemptto establish the principles of equal opportunities for disabled people in someareas of public life, including employment. It establishes new obligations foremployers and public services with respect to the equal treatment of disabledpeople. The latter Act allows for the provision of financial support to disabledpeople in order to enable them to purchase, and therefore assume greater controlover, their own personal assistance. Many authorities were slow to take up theopportunity to provide funding directly to disabled people to enable them tocontrol assistance, despite evidence from early studies that this way of meetingneed was welcomed by disabled people themselves (Kestenbaum, 1993).Subsequent research has shown that, in addition to the benefits offered to disabledpeople in terms of personal assistance, direct payments are also more cost effective,given reductions in overheads for local authorities (Zarb and Nadash, 1994).

Furthermore, inherent in the policy guidance accompanying the 1996Community Care (Direct Payments) Act is an obligation that local authoritiesdevelop schemes that “serve all adult client groups equitably” (DoH, 1996, p 4).The origin of this concern for ‘equitable treatment’ lies in the fear that peoplewith learning disabilities, and people with mental health impairments, mightfind it more difficult to access direct payments. However, there are clearimplications of ‘equitable treatment’ for the inclusion of parents, and parentingactivity, within the scope of the Act (Hasler, personal communication, 2000).

Direct payments will continue to be an important goal for many disabledparents. An important policy development is the amendment to the 1989Children Act, introduced by the 2001 Health and Social Care Act, whichallows for direct payments to be made to disabled parents under a new section17a of the 1989 Act. This specifically recognises the importance of supportingdisabled parents adequately as a way of promoting the best interests of children.However, there remains a concern that this avenue of support is still dependenton the labelling of children as ‘children in need’ and does not, therefore, addressthe barrier that this represents for many parents.

Another important recent development has been the introduction of Fairaccess to care services (DoH, 2002, and hereafter referred to as FACS), due to beimplemented in April 2003. This policy development is concerned with equitabledelivery of services, and with giving local authorities a framework for theconsistent application of eligibility criteria for adult services based on clearpriorities and understanding of risks involved. Disabled parents see this as animportant development, in that it offers an opportunity to make sure thatparenting is seen as an activity that disabled people may legitimately need supportwith. Indeed, the FACS policy guidance states that:

in the course of assessing an individual’s needs, councils should recognisethat adults, who have parenting responsibilities for a child under 18 years,may require help with these responsibilities. (DoH, 2002, p 2)

26


This establishes the principle that parenting is a role for which disabled peoplecan access support from adult community care services. It also offers thepossibility that such support does not have to be tied in with child welfareconcerns in the way that invocation of the 1989 Children Act or the Frameworkimplies.

In summary, community care legislation, as a route to accessing support fordisabled parents, does not require them to accept that their children are ‘inneed’. It should provide a route whereby disabled adults can seek assistancethat underpins and supports their parenting role without having that supportprovided through the filters of ‘risk’ and ‘need’ inherent in children’s legislationand policy. However, the climate of scarce resources, as well as means tests andcharges written into adult social care legislation, has meant that parenting hasseldom featured, until recently, in eligibility criteria in community careassessments. As the SSI inspection of disabled parents’ services noted:

Criteria for getting an assessment and services varied between care groupsin adult services but for the majority being a parent was not part of theeligibility criteria nor the priority matrix. In children’s services parentaldisability was one of the indicators of a ‘child in need’ case. (DoH, 2000b,p 27)

The ability of the FACS guidance to rectify this situation, and the differentroutes that FACS and the Framework may take in constructing a place fordisabled parents within future policy and practice, remain to be seen.

The legislative and policy background to the study of parenting and disabilityis, therefore, at a crossroads. Existing legislation has often proved inadequate inproviding a framework for the delivery of support that includes the parentingresponsibilities of disabled people, and that does not alienate disabled parents.The growing acceptance of direct payments as a legitimate vehicle for managingthe provision of support, as well as the new policy developments highlightedabove, offer a way forward that might enable disabled parents to access supportin appropriate ways. (However, the success of such initiatives in reaching disabledparents, and their effectiveness in providing the kind of support required, remainto be seen.)

Finally, it is important to stress that the legislative and policy context has sofar been discussed with reference only to England and Wales. Child welfarelegislation and policy differs in Scotland and Northern Ireland, and the scopefor further divergence in the future is, arguably, heightened by the growinglegislative autonomy enjoyed by parts of the UK outside England and Wales.There is insufficient space here to conduct a thorough review of the differencesin children’s legislation in Scotland and Northern Ireland (for a discussion, seeTisdall, 1997). However, some key differences, of relevance to policy and practicein the area of disabled parents, are worth highlighting, particularly in the contextof Scotland. Of greatest significance is the wider definition of ‘children inneed’, which specifically includes children “affected by disability of another

27


family member” (section 93(4A) of the 1995 Children (Scotland) Act). This isa significant deviation: although children with disabled parents may well comeunder the definition of a ‘child in need’ in England and Wales, their specificinclusion in Scotland – Tisdall (1997) argues – gives them greater legal protection(for instance, where the support needs of a ‘young carer’ are inadequately assessedand/or met). Indeed, the term ‘child affected by disability of another familymember’ has been used by some researchers in Scotland (especially those basedat the Strathclyde Centre for Disability Research) as an alternative term for‘young carer’, an approach which, we would argue, tries to combine a socialmodel approach to disability with a commitment to supporting children ascarers.

Scottish authorities are required to deliver less by way of a specific range ofservices for ‘children in need’, when compared to the duties imposed by the1989 Children Act or the 1995 Children (NI) Order, the comparable legislationin Northern Ireland. While this offers greater flexibility in the provision ofservices, it can also mean that, in an environment of scarce resources, authoritiescan legitimately provide a more restricted level of support to ‘children in need’.Scottish legislation is also more specific about the responsibilities of parents, aswell as their rights, with legislation in England having a more vague and generaldefinition of these issues. These, and a range of other legal and proceduralissues, make for a somewhat different legislative context for child welfare inScotland. Indeed, the continuing potential for divergence between policy andpractice north and south of the border will be of relevance for disabled parentsfor years to come.

Conclusions

This chapter has identified the disparate and fragmented literature and policydiscourses that encompass disabled parents. We have argued that the theorisationof disability and parenting has been weak, and has been informed by paradigmsanchored in medical model thinking and in sets of negative assumptions aboutthe capacity of disabled people to parent, and the likely long-term consequencesfor their children. This, coupled with the absence of disabled parents frommainstream parenting research agendas, has served to reinforce the isolation ofdisability and parenting in areas which, by definition, problematise the parentingof disabled people (for example, ‘young caring’). We have also discussed theway in which parents – and parenting – have received, until recently, relativelylittle attention from within the disability movement itself. This book is anattempt to address this empirical and theoretical fragmentation, by presentingdetailed data on the experiences of disabled parents from a social modelperspective, which sees the parenting of disabled parents primarily as an equalopportunities issue.

However, before proceeding to discuss our approach to the design of ourresearch and the methods employed, one other issue is worth at least briefcomment: that is, gender.

28


It is impossible to study parenting within a gender-neutral framework.Whether in terms of the biological origins of children, or of the sociallyconstructed norms that structure the way in which people take responsibilityfor – and care for – their children, it is essential to grapple with the differentialstatus and roles laid out for men and women as parents. This concern with theinherently gendered experience of parenting has led several authors to questionthe usefulness of ‘parenting’ itself as a term (Brannen, 1992; Allan, 1994; Edwards,1995; Oakley et al, 1998). For instance, Edwards argues that:

the gender neutral idioms of ‘parenting’ act to mask the fact that it ispredominantly women who care for children. (Edwards, 1995, p 251)

Our approach has been to retain ‘parenting’ alongside ‘disability’ as the central fociof this book (although later chapters do engage with the significance of gender inthe parenting activity of disabled people). In so doing, we acknowledge the generallygreater role played by women in caring for children, as well as the overrepresentationof mothers, and motherhood, in moral panics, such as those surrounding singleparenthood and its relationship with juvenile crime, educational underachievement,and so on (Edwards, 1995). We also acknowledge the importance of other highlygendered discourses in considerations of parenting. For example, an understandingof the experience of both learning-disabled mothers (Cotson et al, 2001) andmothers with depression and other mental health impairments (Sheppard, 1997;Stanley and Penhale, 1999) requires an understanding of the significance of domesticviolence in their parenting experiences.

However, we also recognise that the ideological association between parentingand mothering – stretching back to postwar commentators’ concern with‘maternal deprivation’ (Bowlby, 1965) and to the origins of the concept of‘good enough parenting’ in the work of Winnicott on ‘good enough mothering’(see Winnicott, 1964; Mortley, 1998) – also acts to exclude and marginalise therole, status and experiences of fathers. Indeed, the remarkable overrepresentationof mothers as research subjects in studies on parenting, and the origins of thedisability movement’s interest in parenting within explicitly feminist perspectives,caution us to be especially inclusive of mothers and fathers in order not toreproduce this exclusion and marginalisation. While it may be right that theterm ‘parent’ masks the disproportionate involvement of women in caring forchildren, it nevertheless indicates a willingness to include men as parents in away that much social and family policy research and policy fails to do. Theterms ‘chairperson’, ‘firefighter’, ‘spokesperson’, ‘police officer’, and so on, serveto mask the fact that most of the work carried out in those professions is doneby men, yet those terms are used, rightly, because to identify those roles withbeing male might act as a barrier to equal opportunities for women.Correspondingly, the use of the term ‘parenting’ in this book, as well as in thedesign of the study and in methods of recruitment, indicates our commitmentnot to exclude fathers and fathering from consideration, particularly given thepossibility that disabled men may play a greater role than non-disabled men in

29


parenting and childcare given their underrepresentation in the paid labourmarket (Wates, 1997). We have therefore adopted an approach that is inclusivein terms of disability and inclusive in terms of parenting. Appendix One looksmore closely at the way in which this commitment to inclusion has structuredthe design of our study.

Notes

1 For a full review, see the mapping exercise carried out by the National Family andParenting Institute (NFPI), and published in Henricson et al (2001).

2 See, for example, Gibbons et al (1990); Oakley et al (1995); Smith (1997); Mortley(1998); Oakley et al (1998); Roker and Coleman (1998); Barlow (1999); Newman andRoberts (1999).

3 See, for instance, the publications of Hirsch et al (1985); Radke-Yarrow (1991);Jamison and Walker (1992); White and Barrowclough (1998). Note also the titlesadopted for these works.

4 For attachment theory, see especially Bowlby (1965); Rutter (1966); Rutter andMadge (1976); Rutter et al (1976); Rutter (1981).

5 See, for the main examples, Keith and Morris (1995); Parker and Olsen (1995a,1995b); Olsen (1996); Morris (1997); Olsen and Parker (1997); Olsen (2000).

6 We hope that this book will take its place in this social model tradition, and serve tofurther our understanding of parenting and disability in terms of barriers, access andequal opportunities.

7 For an excellent discussion of the different historical and philosophical backgroundsto these sets of legislation, see Hallet (1991).

8 For further discussion of the current policy and practice context, see Wates and Olsen(forthcoming). Due to a lack of space, we have not expanded the discussion to includeother potentially significant developments such as the inclusion of parenting supportwithin the White Paper Valuing people: A new strategy for learning disability for the 21stcentury, or Articles 8 and 12 of the 1998 Human Rights Act, which include the right torespect for private and family life, and the right to marry and to found a family, respectively.

9 See, among others, UPIAS (1976); Oliver (1990); Morris (1991); Shakespeare and Watson(1997).

31

Demographic characteristics of the final sample

TWO

Demographic characteristicsof the final sample

This chapter examines the breakdown, by means of a range of basic demographiccharacteristics, of the families in our study1.

Stage One

Stage One fieldwork was conducted between October 1998 and June 2000.Interviews were conducted with a parent from 67 families, a child (or children)in 60 of these families, and with 37 partners. The duration of interviews variedwidely, with a mean of 133 minutes for parents, 76 minutes for partners and 27minutes for children. Some of the longer interviews were carried out overtwo, and occasionally more, visits. Fifty-seven of the parents were mothers –only 10 disabled fathers took part. Twenty-three families were headed by asingle parent – only one was a father. Fifty-eight of the disabled parents describedtheir ethnicity as white and five described their ethnicity as Indian (includingAfrican-Asian respondents). Only one father was of Indian origin. Two peopledescribed their ethnicity as ‘other’ and there were two refusals to this item. NoAfrican or Caribbean respondents were recruited to the study, although differentcultural backgrounds were represented in a small number of families wherechildren were born into dual-heritage households.

Where respondents identified more than one set of impairments, they wereasked which one, in their opinion, was their ‘primary’ impairment. In 21

Table 2.1: Sex of parent (by impairment group and family shape)

Mothers Fathers Total(Dual/Single) (Dual/Single) (Dual/Single)

Mental health impairments only 17 3 20(9/8) (3/0) (12/8)

Physical impairments only 25 6 31(15/10) (5/1) (20/11)

Mental health and physical impairments 12 1 13(9/3) (1/0) (10/3)

Physical impairments and 3 0 3sensory impairment (2/1) (na) (2/1)

Total 57 10 67(35/22) (9/1) (44/23)

32


Table 2.3: Identification as a disabled person (by primary impairmentgroup)

Primarily Primarilyphysical/ mental

“Would you describe sensory healthyourself as disabled?” impairments impairments Total

Yes 35 4 39

No 4 15 19

Sometimes 6 2 8

Refused/not answered 1 0 1

Total 46 21 67

Table 2.2: Sex of parent (by any mental health impairments andfamily shape)


Current mental health impairments 29 4 33(18/11) (4/0) (22/11)

No mental health impairments 28 6 34(17/11) (5/1) (22/12)

Total 57 10 67(35/22) (9/1) (44/23)

families the primary impairments involved mental health. However, 33 of theparents in total spoke of having some form of current mental health impairments(Table 2.2).

When we approached potential respondents to our survey, we made it clearthat we were interested in the experiences of disabled parents. Nineteenrespondents, however, did not describe themselves as disabled, and a furthereight respondents said that they ‘sometimes’ described themselves in this way.Less than 60% of the sample, then, responded outright that they were a disabledperson (n=39), and respondents who described primarily mental healthimpairments were less likely to describe themselves as disabled (Table 2.3).

Respondents were also asked when their impairment or condition first hadan impact on their day-to-day lives. For half of the sample, the impact (thoughnot necessarily its initial onset) began having already become a parent. Theimpact for the other half had taken place at various points in their lives, frombirth to adulthood (Table 2.4).

33


Table 2.4: “When did impairments begin to impact on day-to-daylife?” (Primarily physical and/or sensory impairments/mental healthimpairments all considered)


Birth or childhood 10 1 11(7/3) (0/1) (7/4)

Adolescence 5 0 5(1/4) (0) (1/4)

Adult, before becoming a parent 17 0 17(11/6) (0) (11/6)

Adult, before becoming a step-parent 1 0 1(1/0) (0) (1/0)

Since becoming a parent 24 9 33(19/5) (7/2) (26/7)

Total 57 10 67(39/18) (7/3) (46/21)

Stage Two

Table 2.5 describes the 12 families recruited to Stage Two of our research. Ineach family, upper-case letters are used to identify the ‘target parent’ (for example,MOTHER), although several families had other disabled or ill members. Somedetails have been changed in order to protect the anonymity of the families.

Note

1 A full discussion of the methodological issues faced in carrying out this research isgiven in Appendix One. Further information on the structural context in whichthese parents were parenting (for example, employment, income levels and housingstatus in particular) is presented in Chapter Three.

34


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37

Access to support

THREE

Access to support

Introduction

This chapter discusses the findings of our study in relation to the supportavailable to disabled parents. It looks at the way in which both formal andinformal sources of support were differentially available to the families in ourstudy, as well as the different ways in which formal and informal sources ofsupport work together to promote or inhibit parenting choices.

It is our argument that the support ‘needs’ of disabled parents – an adequateincome, secure and accessible housing, a network of informal support, accessto leisure facilities, among other things – are intrinsically no different to thoseof non-disabled parents. However, disabled parents often find it harder toaccess these sources of support, for reasons such as inaccessible environments,negative attitudes and structural disadvantage. Such barriers must be removedso that disabled people can parent with greater control and independence.

We also argue, however, that the exclusion and marginalisation that disabledparents often face cannot be understood without an awareness of other broaderforms of disadvantage and social exclusion, such as poverty and racism. Inparticular, the way in which access to parenting roles for disabled people intersectswith the way in which parenting is differentially constructed for mothers andfathers, and with other structural inequalities closely associated with gender, isof great importance. The chapter ends by taking a look at the implications ofour arguments for the provision of services to disabled parents.

It is quite artificial to distinguish between the support available to disabledpeople in general, and that available to them specifically as disabled parents.When parents in our study talked about the lack of service coordination andresponsiveness, especially in the period immediately following the onset ofimpairments, they referred to the effects in terms of the impact both onthemselves as individuals as well as on the family as a whole. Indeed, while thefocus of our interviews was on parenting, respondents very often talked aboutbarriers to support applicable to disabled people more generally – issues aroundaccess to services and facilities, difficulties in getting information in accessibleformats, financial barriers, and so on. Our approach has been to focus, whereverpossible, on access to support with parenting. However, it has not always beenpossible, or indeed even desirable, to separate this from the broader context ofsocial exclusion that faces disabled people.

38


Use of formal support

It is important to emphasise that not all disabled parents are service users. Table3.1 illustrates the relatively low level of formal service used in the 67 Stage Onefamilies.

For some services, a low take-up is to be expected. For instance, our interestin parents with at least one child aged 7-18 meant that only a minority hadvery young children at the time of interview, which might explain the low useof midwifery services. In addition, differences in the use of services according

Table 3.1: Current use of formal services by Stage One families

Total numbercurrently using service Current user:

Family shape Impairment groupDual Single PI MHI

Health visitor 5 5 0 2 3

District nurse 10 8 2 10 0

Midwife 2 2 0 1 1

Psychiatric nurse 6 3 3 0 6

Chiropodist 11 7 4 11 0

Alternative health 7 4 3 5 2practitioner

Psychiatrist 11 8 3 2 9

Speech therapist 0 0 0 0 0

Occupational therapist 20 14 6 17 3

Physiotherapist 13 7 6 13 0

Consultant (outpatient) 31 23 8 30 1

Family planning 1 0 1 0 1

Counsellor 8 4 4 3 5

Psychotherapist 5 1 4 2 3

Home-help worker 12 5 7 12 0

Meals-on-wheels 1 0 1 1 0

One social worker 17 10 7 15 2(adult or child)

Two social workers 3 1 2 3 0(adult and child)

Daycare services 5 3 2 1 4

Advocate 3 1 2 2 1

Befriender 0 0 0 0 0

Voluntary agency 10 3 7 8 2

Self-help group 9 7 2 8 1

Other service 19 11 8 14 5

PI = Physical impairment

MHI = Mental health impairment

39

Access to support

to impairment group can partially be explained by the nature of the service onoffer. That is, it comes as no surprise to find that physiotherapy was usedexclusively by parents with physical impairments. Similarly, we would expectparents with mental health impairments to use psychiatric nursing servicesmore frequently. However, it is striking (Table 3.1) that parents with physicalimpairments had greater access to key social care supports such as social workersand home care.

Table 3.2 shows that two thirds of the physically impaired parents in oursample had access to formal, social care support of some kind, compared toaround 40% of parents with mental health impairments. Although this is of nostatistical significance, it does indicate an important difference in the availabilityof formal social care support. The table also illustrates that single-parent familieswere more likely to report using some kind of social care support – 17 out of23 single parents reporting receiving help, compared with 23 out of 44 parentsin dual parent-households.

In total, 17 of our families reported having one or more social workers. Thefact that only a quarter of the families in our sample had any social workcontact is important in itself, indicating once again that the broader populationof disabled parents cannot be characterised as ‘service users’ in the conventionalsense. Where families did have social workers, we asked whether they werefrom adults’ or children’s teams – the data are presented in Table 3.3.

Table 3.2: Parental use of any social care services (by family shapeand impairment group)

Family shape Primary impairment group

Dual Single PI/Sensory MHI Total

Use 23 17 31 9 40

Non-use 21 6 15 12 27

Total 44 23 46 21 67



Table 3.3: Social work contact with families (by family shape)

Family shape

Dual Single

No social work involvement 34 16

Social worker: child only 1 4

Social worker: parent only 8 1

Two social workers: parent and child 1 2

Total 44 23

40


Table 3.3 illustrates that seven out of 23 (about 30%) of single-parent familieshad a social worker, and that in four cases this was a children’s social worker.The figure for dual-parent families was only a little over 20% (10 out of 44),with the social worker being based in adults’ services in eight of these ten cases.Again, while this may not be of statistical significance, the data suggest thatsingle parents are more likely to have a social worker, and that the social workeris more likely to be based in a children’s social work team. This indicates thatthe nature of social work support for single parents may have a different emphasis,with child welfare concerns being given greater prominence. It also suggeststhat single parents are less likely to see social work support driven by adultteams, with the likelihood that support with parenting has a lower prioritythan child welfare and child protection.

Barriers to the use of formal support

What we have seen, then, tells us that many of the families had little or noaccess to formal services. For some, this was simply a reflection of what theysaw as a lack of need, and we must caution against the assumption that disabledparents will necessarily need additional support from formal agencies. Forothers, the unavailability of support was a major issue, not least because it wasoften seen as detrimental to health:

It’s the everyday things as well … it’s really painful on my bad days gettingthe kids to school.Mother (PI, MHI), dual-parent family

This appeared especially so for parents who had struggled to have theirimpairments recognised at the time of their onset. For instance, several parentswith ME reported the negative effect on their health of having to battle to gettheir condition recognised. Some even reported that medical staff had givenentirely inappropriate advice (for instance, to exercise rather than rest), whichhad subsequently led to a deterioration in impairments and often set themback years in terms of managing, or recovering from, their condition. Oneparent with ME described a ‘medical regime’ denying her impairments in theearly years, with nursing staff refusing her the use of a wheelchair in order toencourage her to walk. She ascribes two years spent almost wholly in bed tothese errors in early treatment, and the absence of appropriate support, duringwhich two of her children were still of school age.

Indeed, the unavailability of quality healthcare, particularly for parents withmental health impairments, was identified as particularly important. Severalparents said that the level of support and treatment open to them as individualswas so poor that the question of support with parenting was simply not on theagenda. One parent was scathing about the treatment available to his wife onthe NHS:

41

Access to support

It’s really incoherent and, I would say, rudderless. Basically, in terms oftreatment, they seem to start with the cheap rubbish and then go fromthere.Father, dual-parent family (mother, MHI)

The priority for such parents was suitable medical treatment, and only rarelywould these families see support in terms specifically of parenting.

Attitudes towards disability and parenting

According to parents in our study, barriers exist to the use of formal support,particularly in the attitudes of those offering such support, or, rather, thoseacting as gatekeepers to it. Many felt that the inappropriateness of some formalsupport lay in the invisibility of disabled parents in the mindset of professionals.Several parents described how social services had sought to assess their needs asan individual, rather than as a member of a family with dependent children:

My community care assessment didn’t really take any notice of the fact thatI had two young children…. It was all about me and my needs.Mother (PI, MHI), dual-parent family

Several parents had requested help with looking after their children; the services,however, were unwilling to recognise that parenting was a valid support need:

The OT [occupational therapist] asked me if I needed any help but I’ve beentold that I can’t have it. They’ve said they would help with personal care….They would cook for me but not them [the children]…. I rang social servicesto ask them for help – I was in a mess. I said to social services if I didn’t cook,wash, etcetera, you would have me for neglect, but I got no answer.Mother (PI), single-parent family

The conceptual invisibility of disabled parents, discussed in Chapter One, wasnot, however, limited to statutory authorities. One single mother had beenoffered low-cost transport to the supermarket once a week by a local voluntarysector group. However, she was unable to use it, initially:

Well, they had agreed to take me shopping and everything was fine, butthen they phoned me back and said they could not take children as passengerson insurance grounds. This meant that I simply couldn’t use it. I mean, it’sas if they assume that disabled people just don’t have children. In the end, Iargued with them and they got back to me, saying “Yes, you can bring yourchildren, but only because you’re a single parent”, which I thought was astrange thing to say.Mother (PI), single-parent family

42


Many parents also felt judged concerning the suitability of their becomingparents in the first place. As well as the issue of health, several of them reportedthat social care professionals had told them that “Disabled people shouldn’thave children”, or had asked “How can you possibly look after a baby whenyou can’t even look after yourself?”.

Other parents talked about the availability of support services, yet felt unableto use them given their location or working hours. For example, they wereavailable at times that did not suit the routines of parenting, especially beingthere for children and having to take them to and from school. One parent,caring for his three children during his partner’s periods of severe depression.said:

I lost my job around the time of her third pregnancy, which involved a lot oftravelling to hospital in [nearby town], and problems of what to do with theother kids. I did ask for help from social services but was offered a playschoolplace at [other side of city] for two hours. After allowing for bus journeys Iwould have to go straight back to fetch him as soon as I got home, so itwasn’t worth it. I was also offered some counselling but it was in town andjust impossible to get to given that I had to pick the kids up from school.Once I’m there I can start talking about how it all feels but it’s getting therethat’s the problem.Father, dual-parent family (mother, MHI)

This case illustrates the importance of considering the broader social andeconomic factors that prevent service use. This is echoed in the Social ServicesInspectorate (SSI) inspection of services to disabled parents, which found thatbuildings-based services were rarely appropriate for disabled parents, given traveltime and the need to be home to meet children from school (DoH, 2000b).

Disabled parents also face other barriers to formal support. These barriersare based not so much on negative assumptions about disability, or on theconceptual invisibility of disabled parents in professional thinking, but moreon assumptions about ‘normal’ family life implicit in the way support is offered.In particular, some professionals seemed to make judgements about parentingdecisions that resulted in formal support being inaccessible for some parents.One single mother had recently begun to employ personal assistants, but stillwanted more assistance getting her children to bed in the evening:

I was told that I could only receive personal assistance with my baby up until7.30pm…. I was told by the social worker that 7.30 is an appropriate bedtimeand no support will be offered after this. So I am told I can have no morehelp past 7.30 as that is supposed to be her bed-time, but she goes to bed atnine and that’s how I want it.Mother (PI, MHI), single-parent family

43

Access to support

Differential access to information

Other difficulties in accessing support concerned the availability and timing ofappropriate information. Many parents talked about the paucity of informationon services and benefits, particularly around the time of onset and/or diagnosisof impairments. For some, the system actually limited the availability ofinformation on offer, with a general unwillingness on the part of professionalsto provide comprehensive advice on the whole range of support available:

I think that an application for DLA [Disability Living Allowance] would bea good starting point in directing disabled people to other benefits andservices that they may be entitled to. At the moment the system works toput you off and tell you the minimum.Father, dual-parent family (mother, PI)

In addition, some parents felt overwhelmed by the sheer rate of change interms of services and benefits on offer, and in terms of the turnover ofprofessionals with whom they had to deal. This was compounded by the effectthat a continual battle for information about support can have on theimpairments, energy levels and coping abilities of the disabled parents themselvesor of partners taking on ‘caring’ roles:

A leaflet should be available to tell you all the support and all the benefitsavailable. Everything is word-of-mouth and accidentally finding out aboutthings. Simply keeping the household together takes so much effort, thatthere is very little left for chasing benefits or information about things. Andwe ask for very little as it is.Father, dual-parent family (mother, MHI)

One effect of the often poor availability of information is the potentiallyinequitable way in which services are accessed. Several of our study’s parentstalked about finding out about support only by chance from other, often betterinformed, parents:

Everything seemed to lead to a cul-de-sac. For instance, no one ever told uswe were entitled to a free wheelchair…. We just overheard someone saying iton holiday and within a week of getting back we’d got one from the RedCross. After diagnosis there should be a telephone number – a kind of ‘starthere’, because for us it was fragments.Father, dual-parent family (mother, PI)

Similarly, the degree to which parents felt confident enough to pursue servicesvia the telephone was extremely variable. Some described having to badgerprofessionals for support over the phone (a major obstacle in itself), yet others

44


talked about support being easily accessible “so long as you’re prepared totelephone enough of the right people”.

There appears, from what we have just seen, to be an information lottery fordisabled parents. Related to this is the significance of key individuals or eventsin triggering effective formal support. We often found hospitalisation of aparent, or indeed their non-disabled partner, to be particularly important. Thiswas due to the fact that a prolonged stay in hospital is likely to bring a patientinto contact with a range of professionals (such as occupational therapists), or,in the case of disabled pregnant women, midwives and health visitors. Parentsoften talked about having a key professional who was able to drive throughsupports elsewhere in the system, or even in neighbouring authorities:

All we get now has come via the rehab hospital in [town]. It’s down to thefact that the consultant has a very positive philosophy and the desire to seeit through, so the other members of his team are progressive as well. They’rewilling to battle with social services for proper support. When my wife wasdischarged, she was in a right state … unable to move. I thought, “I’m notgoing to get back to work here, am I?”. Social services were very helpful atfirst but after she rallied and help wasn’t needed, and then relapsed, I foundit impossible to reinstate support. The consultant was brilliant: he reallymade the social worker squirm at a case conference, forcing them into acorner over giving us more supportFather, dual-parent family (mother, PI, MHI)

Several parents also said that the only factor that ensured that they receivedinformation about available support was their membership of a particularvoluntary group. This highlights the important role that such groups play,often on an impairment-specific basis, in providing information and supportto disabled people. On the other hand, it emphasises the potentially unequalaccess to information faced by those parents from communities under-represented in the membership base of such voluntary groups. In addition,although ethnicity was not a major variable in our research, it was also clearthat language barriers, along with assumptions about the nature of extendedfamilies in South Asian communities, could also make accessing formal supportmore difficult. One parent who spoke little English was trying to get domesticsupport for himself and his wife. However, he had encountered significantdifficulty in finding information about support, and in getting an assessment –telephone calls were not returned, and there was great confusion about whetheror not he was entitled to any support.

Further, the importance of family and personal resources is also illustrated bythe number of parents who spoke about having accessed support via personaland professional contacts. One professional disabled father had been able tomaintain good relationships with his daughter’s school, mainly through a personalfriendship with a teacher with whom he shared a particular artistic interest.Another parent talked about the support he and his wife received from one of

45

Access to support

his children’s teachers with whom they enjoyed professional connections aspart of their jobs.

The availability of appropriate and timely information about the supportavailable is clearly an important issue. However, it is particularly important forthose parents who face other forms of exclusion, including additionalcommunication barriers such as the unavailability of information in languagesother than English (including British Sign Language) or in formats accessibleto disabled parents with other communication impairments. It also includesthose who lack personal resources essential in battling for information andsupport – for example, confidence in using the telephone in dealing withprofessionals – or do not have personal connections to professionals who areable to circumvent conventional pathways to information, suggest short-cuts,explain jargon, and so on.

Formal support agencies as a source of conflict

For some families, difficulties in accessing support from formal sources wentmuch further. We are aware that many families do not want social servicesinvolved in their parenting. For a small number of families in our study,relationships with a range of statutory agencies, and social services in particular,were constructed in extremely negative terms. For example, families went togreat effort to prevent their children from being placed on the ‘at risk’ register.The relationship between parents and professionals in this small number offamilies was characterised by conflict and mistrust, to the point that our questionsabout how professionals might provide support to them as parents were oftenmet with incredulity. Several parents talked about how conflict with professionalshad subsequently made their attempts to receive support more problematic.Others talked about being unable to access necessary support because of a fearthat their behaviour would be interpreted negatively, for instance in the case ofseveral parents who were worried about making excessive use of their GP forfear of being labelled as ‘neurotic’ as well as ‘mentally ill’. Other parents talkedabout what they saw as the unacceptable conditions that were imposed on anyoffer of formal support, leaving them with no help at all. For instance, onefamily felt penalised because of one parent’s previous criminal conviction, whichhad led to unfounded rumours concerning the family being circulated amongprofessionals and neighbours alike. In this case, the service professionals madeapproaches to the mother, implying that more support would be available toher if she ‘ditched’ her partner. They also made an offer of home care provisionby ‘teams’ of staff – as opposed to individual workers – on what the family sawas spurious safety grounds.

Some parents said that their requests for support had been ignored, only forprofessionals to take an increased interest in the wellbeing of their children at alater date when the situation had worsened.

46


Basically, all the social workers do now is suggest things that are eitherunwelcome or then don’t happen. They have now suggested a psychiatricsocial worker – I needed one of them 18 months ago when I was on thepoint of collapse. I asked for a community-care assessment which neverhappened. At the time I got nothing – even with the emergency team therewas so much delay. They weren’t there while I needed them, but now theyare turning it around and telling me all the things I have to do to keep mykids. I wanted a community-care assessment but gave up banging our headsagainst a brick wall. Since then, we have been trying to keep social servicesoff our backs. For instance, they insisted on a 3pm meeting on Fridaywhich I refused as I’ve got to get the kids from school.Mother (PI, MHI), dual-parent family

This case illustrates that formal services are often unaware of the parentingresponsibilities of disabled adults when they offer services or even appointments.More importantly, perhaps, it illustrates that, for some families, the supportiverelationship that might exist with statutory bodies is subverted by other powerfulfactors, including the role that social services in particular play in policingfamilies they are concerned about. The mother in this case also talked aboutstruggling with one of her children to the supermarket only to come backhome empty-handed after her child refused to enter the shop, having seen alocal social worker shopping there. We are not suggesting that social servicesshould jettison their paramount concern with the wellbeing of children. Rather,what we are arguing for is an awareness that extra barriers to support mayresult if relations with families with disabled parents become so entrenchedand negative.

The Framework for the assessment of children in need and their families, discussedin Chapter One, emphasises that support by way of direct work with families“may be offered at the same time as family proceedings are in progress” (DoH,DfEE and HO, 2000, p 9). In the light of the experiences of a small number offamilies in this study, this seems a little optimistic. A small number of ourstudy’s families were engaged in deeply negative, conflicting relationships withsupport agencies, and these families found it difficult to see those agencies aspossible sources of support with respect to issues of parenting. The importance,therefore, of keeping channels of support open despite other ongoing concernsabout child wellbeing cannot be overestimated. While it is well acknowledgedthat, at a ‘system’ level, child protection concerns have often tended to squeezeout family support practice (Dartington Social Research Unit, 1995), it isimportance to recognise the potential for this also happening at the level ofindividual families.

Impairments as barriers?

The parents that took part in our study told us about the hurdles placed intheir way when it came to using formal sources of support. As we have seen,

47

Access to support

some parents also told us about poor relationships with service providers, whichmade it extremely difficult to see those agencies as sources of support. However,other parents talked about the roots of barriers to the use of services (whether‘special’ or mainstream) that are inherent in their impairments. This wasparticularly so for some parents with mental health impairments, and theirpartners. For example, one father considered the main reason for not makinguse of services such as Homestart were his and his wife’s forgetfulness and lackof organisation:

We’ve been offered Homestart but I’m not so sure about the idea of peoplecoming in to clean … partly because we would have to tidy up before theycame. It’s my fault, it’s down to me – I don’t help myself. Plus, the wifefinds it difficult to cope with the idea of regular help, despite the fact thatsome days she is so depressed she can’t lift a finger. Partly, it is about othersknowing your business, but also about feeling a pressure to have to put onsome kind of public front or face every day.Father, dual-parent family (mother, MHI)

For others, the standard of their housework – and their control over it – werebarriers to receiving outside help. For instance, one mother had periods whereshe was too depressed to fulfil her usual role of ‘housewife’. However, shedescribed a central part of her mental health impairments to be the need toretain control of household matters, and therefore found it extremely difficultand challenging for home-care staff or other family members to take overhousework when she was ill.

It is really difficult to see how any support could be given. When I’m welleverything is fine, and when I’m ill I’m not receptive to having any helpanyway.Mother (MHI), dual-parent family

Other parents also talked about difficulties inherent in their impairments thatmade the receipt of formal support difficult. The husband of a mother withmultiple sclerosis (MS) talked about the problems that his wife’s poor anderratic memory had caused with regard to formal support. In particular, shewould often forget to tell her husband that a particular service had been reviewedor cancelled, or that other changes in her support arrangements had beenmade. This would lead to gaps in service receipt that her husband would beunaware of for some time and that he would then have to try to reapply for.

Chapter Six examines the implications of these comments, and others, forour understanding of the social model of disability in relation to parenting.They have been introduced here in order to illustrate the importance ofrecognising that, although services are offered in ways that can present barriersfor disabled parents, it is also features of impairments themselves that can frustratethe effective provision of support. Of course, this does not mean that those

48


providing formal services should not seek to adapt their practice in order toremain as accessible as possible.

This section has so far looked at the barriers facing parents when usingformal support, according to their own reports. Not least of these barriers isthe implicit assumption that disabled people do not have children. The pooravailability of information about benefits and services that parents reported, aswell as the particular difficulties experienced by disabled parents facing additionalforms of exclusion (based on ethnicity, communication impairments,socioeconomic disadvantage, and so on), have been examined also. We haveemphasised how conflict between parents and professionals hamstrings attemptsto provide support, and have discussed some of the factors internal to theexperience of impairments that compromise the suitability and appropriatenessof various forms of formal support. These various sets of issues, which structurethe ability of formal services to enable the parenting role of disabled people,should inform a process of critical evaluation within those agencies offeringsupport. Access to, and appropriateness of, formal support is contingent onmany factors; therefore, those bodies providing formal services should beimaginative and flexible in the way support is offered. We now examine theissue of informal support in our analysis.

Barriers to the use of informal support

Interviews with the parents in our study show that disabled parents’ access tothe creation, and maintenance, of informal networks of support can becompromised. The reasons for this mirror the barriers identified earlier in thischapter, and include – among many other things – lack of money, inaccessibleor unsuitable housing, and the absence of accessible transport:

I knew most of the parents of my son’s friends from the days before I wasdisabled, but really I’ve been virtually housebound since and have made nonew friends. I don’t know any of the other mums at his new school.Mother (PI), single-parent family

In comparison, several parents talked about having an extensive informal networkthat was established before the onset of disability and, in so doing, recognisedthat establishing such a network at this point would be much more difficult.

I’ve got a good network here and in the surrounding villages – that’s why Imoved to the village. I wouldn’t be able to build up a network like I havenow I’m disabledMother (PI), dual-parent family

Not only do disabled parents themselves face barriers to accessing informalsupport; members of informal networks may also face difficulties in relation totransport, mobility, poverty, and so on. Several parents talked about the increased

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Access to support

difficulty in accessing informal support given the impairments and healthproblems of other family members and friends who would normally be calledupon:

My mum and sister are about 10 miles away but my mum is in a wheelchairand my sister is blind … so any contact we have is to help look after themrather than them look after us. On top of that I have to provide a lot of carefor my daughter [with learning disabilities].Mother (PI, MHI), dual-parent family

For another mother, the most critical moment in her recent life as a disabledparent was not the onset and diagnosis of MS three years previously; rather, itwas the stroke suffered by her father – on whom she had depended for transportand other help.

Fragmented informal support

Our interviews indicated the extent to which the availability of informal supportis by no means straightforward. This is for two particularly important reasons:

1. the fragmented way in which informal support is made available to disabledparents;

2. the identification of family members as very much part of the problem, ratherthan as a source of support.

Many parents talked about the restrictions placed upon the availability ofinformal support. This included friends or family who had strictly limitedroles in terms of what they were prepared to get involved in. One parentcounted three close friends, one of whom tended to help with lending moneyor food, whereas the others were much more willing to provide a listening earwhen she was feeling down. Several other respondents talked about familymembers, friends and neighbours, offering help, but only in a limited sense, andon their own terms.

My dad might cut the hedge or mow the lawn – but there’s no way he wouldgo shopping for me…. When my mum was alive she did a lot more houseworkand shopping.Mother (PI, MHI), single-parent family

Limits on the accessibility of informal support were not solely the result ofboundaries imposed by others. Rather, parents themselves were engaged inlimiting their requests for support from family and friends. For example, onemother described her wide informal network, but qualified this by saying:

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I will call on friends for help with shopping, or to go out for lunch…. Itreasure friendship very much but friends have their own children – howevernice friends are I don’t want to ring and say “I’m desperate”, as they knowthat my husband is working at home.Mother (PI), dual-parent family

Many other parents made a similar point: that friends and neighbours are notthe first people you call on for help, for fear of jeopardising the basis of thefriendship. Recognition of the importance of friends, especially for emotionalsupport, was balanced with a desire to self-limit any help needed. Many parentsdescribed treading a difficult and often tiring line between calling on familyand friends for much-needed ongoing support, and ensuring that such requestswere minimised in order not to unbalance the reciprocity of friendships andrelationships. For instance, many parents talked about having good neighbours,but feeling extremely uneasy about having to call on them for help, particularlyif they felt they could not reciprocate. One mother talked about feeling veryisolated, and saw this as a major problem, given the absence of a partner:

I don’t really have any friends living close by and that is a bit of a problem –I am rather isolated, although I think my neighbours would help if it was anemergency.Mother (PI), single-parent family

Sometimes, the problem in accessing informal support was one of transport,mobility and geographical separation. However, some of those quitegeographically close to family and friends often felt isolated from any informalsupport. Some described living next door to relatives, but hardly saw themfrom one day to the next. For other parents, it was the nature of familyrelationships that precluded them from accessing support, with several describingtheirs as ‘not that sort of family’. The presence of other family members shouldnot, therefore, be read as implying their availability as a source of support (forinstance, in the case of two-parent families, in which one partner has ademanding job that takes him or her away from the house for extended periods).Clearly, disabled parents, as well as non-disabled partners, operate with fragmentedinformal support networks limited by the quantity and quality of help on offer,and by a reluctance to over-use it.

Families as part of the problem

It is clear, however, that most disabled parents primarily call on family members– rather than friends or neighbours – to provide assistance. This is significant,given the way in which several of the families in our study saw some familymembers as part of the problem, rather than as a source of support. For severalparents, disputes and disagreements within the family were a major source ofstress and isolation, and only served to exacerbate any problems already faced

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Access to support

in terms of disability and/or impairments. One mother, for example, wasdepressed and was also caring for a daughter with schizophrenia. The motherattributed the severity of her daughter’s illness to the bullying and abusivebehaviour her daughter received at the hands of her sister-in-law. In additionto stresses felt within the family, she also sought to distance herself from themain South Asian community in the nearby town, and had moved to a townwith a largely white population some miles away:

I like it here. In the Indian community there is a lot of gossip and peopletalking behind your back, particularly with [child] having schizophrenia. Ijust wanted to get away as soon as possible.Mother (MHI), dual-parent family

Clearly, the additional difficulties represented by the prejudicial attitudes of thelocal community are a key part of the disablement experienced by this motherand her daughter. It also demonstrates how those who might ordinarily bethought of as part of the informal support network can in fact be the source offurther difficulty. Of course, this experience is not unique to those from minorityethnic backgrounds1. However, we are aware that mental health impairmentsin particular are often closely related to, and/or exacerbated by, the consequencesof racism. This includes the structural disadvantage that black and minorityethnic communities experience, as well as difficulties that non-white mentalhealth service users face when confronted by a psychiatric system that is basedon Eurocentric notions of what constitutes mental health and mental illness(Patel and Fatimilehin, 1999).

Other parents talked about doing everything they could to avoid contactwith other family members:

My mum lives in the next village but I have no contact if I can help it. Sheis a suicidal schizophrenic and manic depressive.Mother (PI), single-parent family

These views are supported by other studies that have shown that informalnetworks can be a source of criticism for parents; for instance, single mothersand the parents of disabled children (Jack, 2001). Crucially, others saw membersof their family as directly implicated in the onset of their impairments; this wasespecially the case for some parents with mental health impairments. Severalof these parents talked about abuse they had experienced as a child, and theimpact this had had both on their existing mental health impairments and onsubsequent relationships with family members. One father talked about hiswife’s mother living in the same city, but answered “No” when asked if heconsidered her to be close by. He continued, saying they were not sure of heraddress and that lack of contact was partly the result of having no car – but alsoabout ‘incidents’ in his wife’s childhood that had served to prevent her mother

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from being a possible source of support. Another mother, whose own motherlived in the next village, expressed similar sentiments:

I would describe my relationship with my mother as very damaging overthe years, although it has improved somewhat. Basically, she was really angrywith me for having children in the first place, what with my condition. Shereally crushed me with words.Mother (PI, MHI), single-parent family

Therefore, we must question the assumption that family members, even whengeographically close by, necessarily represent a source of support to disabledparents. This is perhaps most obviously the case in those situations where theavailability/desire of ex-partners to stay involved as parents – for instance, as apotential source of support – is compromised by their abusive/violent behaviourin the past. Some mothers talked about their experience of domestic violencein the past, and of the stress involved in trying to manage continued contactwith abusive, or formerly abusive, fathers of their children. The stress includedbalancing the additional support it often represented in terms of parenting, andthe perceived benefits to the children of ongoing contact.

Other family members had difficulty in accepting and understanding thenature and implications of mental health impairments, and this served as anotherproblem for disabled families.

They live up in [other part of country], which leads to all sorts of problems…. They don’t fully understand the nature of [wife]’s illness and they havetrouble understanding why we don’t want to go up and see them when sheis only just back from hospital and trying to recover and looking for somepeace and recuperation.Father, dual-parent family (mother, MHI)

Not a one-way street?

So far in this section we have looked at the way in which the participants inour study described and talked about difficulties in accessing sources of informalsupport. However, our data indicate that disabled parents are sometimes moreable to create and sustain informal networks of support. This can be for avariety of reasons, including the peer support that often comes from a sharedexperience of disability, and from the additional time that those disabled parentsexcluded from full-time employment (or any employment) have to devote tofamily and community alike. Some parents talked about how the onset ofimpairments had led to decisions – concerning where to live, for instance –which brought them closer to grandparents and siblings and thereby enabledthem not only to use them as support but also to maintain reciprocal relationshipsand friendships. Indeed, where informal networks were strong, the benefits

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Access to support

were not limited to parents: they also enabled disabled parents to make a greatercontribution to the community, especially through paid and unpaid work, andinvolvement in other community initiatives. One single, physically impairedmother said having her mother live in an adjacent part of the building washelpful, not only in terms of ordinary family life but in terms of enabling her topursue further education, and to work part-time as a volunteer in the community.Another mother pointed to the benefits of having her parents live close by:

They live in a house whose garden backs onto ours and we moved here to benear them. So if I need help I can ask them or my siblings who also live in thevillage, especially for practical things like shopping – they are so near and wehelp each other out.Mother (PI), dual-parent family

The simplistic view of disabled people as necessarily less able to sustain, andbenefit from, informal support, should be resisted. This is especially so giventhe availability (for some) of support from other disabled parents. Some parentssaid they knew other people experiencing similar problems, and that this gavethem an important informal resource to call upon. Indeed, it was striking howoften parents in our study mentioned other disabled people when talking abouttheir informal support networks. One father commented that, not only hadlocal disabled people been more helpful generally (than non-disabled people),but that they were simply more available, given their exclusion from paidemployment. Similarly, one mother who experienced periods of depressioncommented on her membership of a support network of other mothers withsimilar experiences of depression. This reinforces what Campion has to say onthe issues of disability and parenting:

Even in families where disabled parents may need a lot of assistance inmanaging practical tasks, they may still be the source of emotional strengththat binds a family together. Disability alone is not an indicator of theability of an individual to care for and support others. (Campion, 1995, p 139,added emphasis)

As well as the importance of other disabled people in supporting the parentswe interviewed, it was also apparent that these parents were themselves oftenheavily involved in providing support to others:

Well, I’m the counsellor around here. My house is often full of mums fromaround the village telling me their problems.Mother (PI), dual-parent family

It was clear that disabled parents were part of support networks that involvedgiving as well as receiving support. Several parents talked about the experienceand knowledge they had acquired through the experience of disability and

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how they had been able to share this knowledge with other disabled parents(for instance, regarding leisure facilities such as theme parks with wheelchairaccess). Parents often reported that they gave support to other people in theircommunities, both disabled and non-disabled. For example, one mother haddifficulties in attending parents’ evenings:

The last two times I’ve not been able to go ’cos I’ve been too busy lookingafter my friends’ kids so that they could go.Mother (PI, MHI), dual-parent family

It is ironic, given the emphasis in the ‘young carer’ literature on the likelihoodof children missing out educationally, that this mother’s difficulties in maintainingcontact with her children’s school were attributed to the demands of care givingas opposed to the requirements for care receipt.

In addition to highlighting some of the barriers to informal support thatdisabled parents can face, this section has also pointed out the informal supportthey provide to others. We have discussed the importance of fragmentation interms of the informal support open (or closed) to disabled parents, and havecautioned against any assumption in policy and practice by which the proximityof family and friends represents a supportive and reliable network. This isespecially so for those parents who construct their family as part of the originof their mental health impairments, or who see their family as exacerbatingany problems they currently face (for instance, in the case of abusive partners).The issue of how formal and informal networks might interact in the support ofdisabled parents is examined in the next section.

The interaction between formal and informal support

A variety of factors, then, can compromise access to – and the availability of –both formal and informal sources of support for disabled parents. What hasalso emerged from our research, however, is the importance of the interactionof formal and informal supports, and the importance of conceptualising supportin terms of the needs of people in relationships rather than, necessarily, as individuals.

Some parents felt that access to formal support had been specifically denied,or restricted in some way, due to the perceived ability of other family membersto provide assistance, be that personal ‘care’, parenting, or other roles. As ChapterFour shows in greater detail, in some cases the age of children had been used asa way of justifying the withdrawal of formal support with implications for thedomestic responsibilities of other family members, including children. Oneself-employed father, using an outhouse for work purposes, felt that socialservices had been unwilling to recognise his wife’s parental role:

I feel that there has always been an assumption that because I often work atthe back of the house, that I would be able to do everything.Father, dual-parent family (mother, PI)

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Access to support

Many parents complained about the manner in which responsibility for theirpartner’s assistance, or their children, and other household matters, automaticallyfell to them when formal support was not available. However, the blame wassometimes placed on extended family members for leaving the main ‘caring’roles to partners, rather than on social services for withholding support. It wasalso significant that a number of partners of parents with mental healthimpairments talked about the strong role they had played in battling for support,and adequate treatment, for their partners. One father described the difficultieshe had experienced in accessing support:

I could have done with support being readily available when the depressionstarted. In the end a lot of help came from [a voluntary mental healthorganisation] but they were difficult to find; eventually my wife went througha national helpline. If I had been on my own I wouldn’t have had themotivation to do it, as the wife has done a lot of pushing for support.Father (MHI), dual-parent family

In the following case, support became both greater in quantity and more effectiveonce contact had been established, highlighting the possibilities for supportwhen an alliance between informal supporters, the voluntary sector organisationand the GP was forged:

First it was a real battle, but then, once the wife had put me in contact with[voluntary sector mental health advocacy organisation], who were excellent,and in combination with the GP, who was also excellent, that pressure wasput on the consultant who until then had really no appreciation of what wewere up against as a family.Father (MHI), dual-parent family

Other partners talked about a particular role they had in diverting stressfulevents and situations away from the disabled parent. This role often intersectedwith gender roles, and often surrounded attempts by fathers to encourageschools to address any difficulties to them rather than their ill partners – oftenwith little success:

We had a very poor experience with the boys’ school. There was a bit of aproblem with him … you know, discipline-wise, and the school keptcontacting my wife about it and making her very anxious. I asked them ifthey could go through me with any problems, in order to prevent thisanxiety. I’ve even made sure that they have my work number, my mobilenumber … and I make sure my boss always knows where I am should thingshappen, but they still don’t bother and they continue to phone and agitatemy wife.Father, dual-parent family (mother, MHI)

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Parents and partners alike resented the manner in which the system worked –several were quick to point out that, by giving up their work to look after theirpartners, they had ‘saved the state thousands’. Their reward, however, was asmall benefit increase, leaving the family worse off and under greater stress as aresult.

We also spoke to families who had received advice from professionals thatemphasised family self-reliance and served to close the door to any form ofprofessional support. One father, who gave up work to look after his wife andchildren at home, said:

Her consultant told me to give up work, as it was not safe for my wife to lookafter a young child while lying down and on medication, simple as that.Father, dual-parent family (mother, PI)

In this case, the consultant made a judgement not only about the ability of thismother to cope both with a small child and her own impairments, but alsoabout the correct course of action for the family as a whole. This confirmswhat other studies have said about the importance of professional attitudes inlimiting access to support for carers and other family members (see, for example,Twigg and Atkin, 1995). The possibility that support could be provided forthis mother that would enable her to look after her child and enable her husbandto keep working, and therefore maintain a higher standard of living for thefamily, was simply not considered.

Another parent described the difficulties he had keeping his business afloatas his wife’s impairments worsened. Eventually, it became impossible for himto go away on business and leave his wife at home – his business folded and hebecame a full-time carer. Adequate and earlier support might, this parent argued,have allowed him to keep the business going and prevent the family frombecoming dependent on benefit. Another parent talked about a particularlydifficult time in her depression five years ago:

The worst time was when I was acutely depressed. That was a real crisis point.My husband gave up work and all we were offered was foster care for thechildren, and to us that was no option.Mother (PI, MHI), dual-parent family

It is apparent, then, that the interaction of formal and informal sources ofsupport has the scope both to restrict and enable choices for families. Someparents and partners described very positively the balance between statutory,voluntary and family involvement in any assistance they required. Othersperceived formal and informal sources of support to be in conflict – formalsupport was available only when informal support was not.

This section has highlighted the sense of frustration that many parents andother family members feel when an absence of formal support places strains onexisting roles and relationships within the family (an issue discussed at greater

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Access to support

length in Chapter Five). For disabled parents and their families to be providedwith the holistic, flexible and responsive support essential for enabling successfulparenting, it is important that formal support is offered in a way that promotes,underpins and enables existing family and friendship relationships. The dangeris that other family members are seen solely as resources, limiting the availabilityof formal support. In order to achieve this positive relationship between formaland informal sources of support, a broader understanding of the ways in whichsupport needs can be met, as well as of the underlying origins of those needs,is essential.

Developing a broader understanding of the origins andinterplay of support needs

As we have seen, our research points to some of the factors that limit the extentto which disabled parents access, and make use of, sources of formal and informalsupport. It also points, however, to the importance of recognising the multipleand interacting sources of difficulty that disabled parents face. We cannotoverestimate the importance of viewing disability as a single factor amongmany that structure the daily lives of families with disabled parents. Policy andpractice which focuses too narrowly on disability as the definitive issue fails tounderstand the broader socioeconomic and structural context in which theseparents parent their children.

Table 3.4 illustrates the underrepresentation in the paid labour market ofthose parents in our sample. Only 12 respondents were in regular paidemployment of more than 10 hours a week, and a number of parents had neverbeen in paid employment.

Table 3.4 also indicates that paid employment and home-making roles are asgendered for disabled parents as they are for parents generally. Five out of the10 fathers in our study were in employment of more than 10 hours per week,compared with seven mothers out of 57. Correspondingly, four out of 10fathers described themselves as ‘looking after the home’, while 45 out of 57mothers applied this label to their own activity. Clearly, then, paid employmentwas the exception rather than the rule for this sample of disabled parents, andthis can only partially be explained by the overrepresentation of mothers withschool-age children. Thirty-two households were in receipt of income support,and 47 parents were in receipt of DLA at some level. The low level of paidemployment and significant levels of dependence on benefits among the familiesled, unsurprisingly, to many in the sample living near, or below, the povertyline (Table 3.5).

The high level of unemployment in our sample, and the extent of relianceon state benefits, alert us to the role that financial and other resource barriersplay in determining the degree to which disablement affects family life andparenting. A parent that has the financial ability to own a fully accessible houseand usable car – as the result of a compensation or insurance pay-out, or as a

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Table 3.4: Current economic and educational activity of disabledparent (by sex, family shape and impairment group)

Sex Family shape Impairment group

PI/M F Dual Single Sensory MHI Total

In the last seven days...

Looking after the home 4 45 30 19 33 16 49

Provided care for family 0 7 5 2 5 2 7members

Unpaid voluntary work 2 15 11 6 15 2 17

Unemployed/registered, 1 1 2 0 2 0 2benefit office

Unemployed/not registered 0 1 0 1 0 1 1

Permanently sick or disabled 5 35 25 15 34 6 40

Wholly retired from work 1 1 1 1 2 0 2

Waiting to take up 0 0 0 0 0 0 0work accepted

In paid work (more than ten 5 7 10 2 5 7 12hours a week)

On a government training 0 0 0 0 0 0 0programme

In full-time education 0 2 1 1 2 0 2

In part-time education 0 6 3 3 6 0 6

Doing something else 0 3 3 0 3 0 3

Total samplea 10 57 44 23 46 21 67

PI = Physical impairmentMHI = Mental health impairmenta Respondents may be involved in more than one activity.

Table 3.5: Parental reports of total household income

Number %

Less than £7,999 pa 16 23.88

£8,000-£11,999 pa 11 16.42

£12,000-£17,999 pa 12 17.91

£18,000-£22,999 pa 5 7.46

£23,000-£28,999 pa 6 8.96

£29,000-£34,999 pa 4 5.97

£35,000+ pa 6 8.96

Do not know 6 8.96

Refused/Not answered 1 1.49

Total 67 100.00

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Access to support

result of remaining in a well-paid job – faces significantly less disability thanthose parents on income support.

Table 3.6 outlines the housing status of the families in Stage One. Fortyfamilies were owner-occupiers, with 27 living in private or public rentedaccommodation. Not surprisingly, single-parent families were significantlymore likely to be living in rented accommodation than dual-parent families –69% and 25% respectively, numbers that are statistically significant.

Some families were struggling to cope in poorly adapted – or unadapted –homes, which they could not move around in or leave without assistance. Onesuch family, who had been in its current local authority home for 18 months,was struggling in this way with no adaptations having been carried out. Themother had lost her mobility for the previous two weeks, having fallen from ahome-made ramp into the back garden. At the time of our interview, she andher husband, like several other parents in the study, were sleeping downstairs inthe living room, and the mother was unsure whether she was going to regainsome mobility:

I can’t transfer on to the stair lift – it’s a nightmare, so my husband has tocarry me. The stair lift was here when we moved in. They said they will doan extension with a wheelchair accessible kitchen, bedroom, en-suitebathroom and outdoor ramp, but I’m not sure if and when this will be done.Mother (PI), dual-parent family

Despite the unsatisfactory housing situation this family experienced, the parentshad chosen to stay put rather than move to an alternative, fully adapted propertythat the council offered to them:

Table 3.6: Housing status (by family shape and impairment group)

Family shape Impairment group

Total of bothDual Single PI/Sensory MHI pairs of columns

Own outright 5 2 5 2 7

Own with a mortgage 28 5 23 10 33

Owns own home 33 7 28 12 40

Rented: privately 1 1 1 1 2

Rented: local authority 8 11 12 7 19

Rented: housing association 1 3 3 1 4

Other (rented from trust; 1 1 2 0 2rented from relative)

Rents own home 11 16 18 9 27

Total 44 23 46 21 67



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We are a priority but so are a lot of other people. I don’t know when theywill be done – and the council might sell the houses off. But I like livinghere better than the house before – this is a much nicer house and garden.I liked it when I could walk around. The council said yesterday that theyhad a three-bed, adapted house on a rough estate, but we are settled.Mother (PI), dual-parent family

Of course, housing is an issue of central importance to many disabled people,whether or not they also happen to be parents. While some in our study livedin satisfactory homes, for several families this was not the case, with obviousimplications for family life in terms of mobility, access in and out of the house,sleeping arrangements, and so on.

In addition to the financial and housing disadvantage faced by many families,parents also talked about problems they had in parenting in terms of the balancebetween home life and work life – disability was something of a side issue.This serves to illustrate that the parenting issues faced by disabled parents aremainstream and are, in essence, no different to those faced by all parents. Thedifference, as we have tried to articulate in this chapter, is the number ofadditional barriers that disabled parents face in addressing those issues. It isalso important to remember that, as all parents know, children are often anindependent source of stress. Several parents had children with emotional andbehavioural difficulties and it was primarily this – and not parental disability –that was identified as a key issue requiring support.

It has been difficult with my 17-year-old growing up. Brought me and myhusband down, his mood swings, drinking, banging doors. It would havebeen useful to have someone else around for moral guidance.Mother (PI, MHI), dual-parent family

One child was asked how he felt about the number of people who came intothe house to assist both his mother and his disabled brother:

I don’t mind really, even though they seem to change all the time. Whatmakes it difficult is the fact that my brother sometimes finds it difficultwhen so many people are coming in, and that upsets him, which affects therest of us when the home-care staff leave.Boy (14), dual-parent family (mother, PI)

Gender and parenting

Of particular importance for understanding the barriers that disabled parentsand their families can face, as well as the nature of any service response, is theinteraction of gender with those factors we have touched on so far. Theexperiences that disabled parents shared with us were deeply embedded both

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Access to support

in the importance of gender in structuring the parenting roles that were opento mothers and fathers, as well as in the association between gender and otherforms of exclusion.

For instance, we have already touched on the importance of domestic violencefor a small number of the mothers in our study:

I split up through domestic violence, so he’s not allowed contact…. The mostdifficult time as a family was when their dad found us through the electoralroll and came back six years later – and we needed rehousing. I’d had a lot todo with Women’s Aid as we’d lived in a lot of refuges. They give you a short-term answer to your problem but not long-term – they’d moved me out of[city] to [another city]; in the end no-one would rehouse us as I had no ties inthese other places.Mother (PI), single-parent family

We have also mentioned the significance that parents attributed to professionalassumptions and judgements concerning parenting and/or disability. Evenwhere parents did not report open hostility on the part of professionals to thenotion of having children, some felt that other assumptions, often to do withgender, were being made. For example, one mother reported:

No professional has ever said I shouldn’t have any (more) children … althoughI feel sure that it was because I am single. I’m sure their approach wouldhave been different if they’d seen me as married…. They just made theassumption that I wouldn’t be having any more because I haven’t got abloke.Mother (PI), single-parent family

Gender, parenting and disability also intersected in the way in which someparents felt able to support and protect their children, especially in what theysaw as a difficult local environment. One parent, for instance, talked about thedifficulty she had simply being ‘a presence’ on the streets that her childrenplayed on – issues of gender and the absence of a father figure played a prominentrole:

It is difficult to provide support to my boys. By that I mean I wish I was ableto back them up a bit more. If I feel they are getting picked on in the street,I find it impossible to get out there and back them up. My son has beenbullied before and I know that the fact that I had come from the ‘rejectshop’ was levelled at him. It wouldn’t happen if there was a man in the house,I can tell you.Mother (PI), single-parent family

Family shape also intersects with gender roles within families. Oliver andSapey (1999) cite a 1979 survey, now somewhat dated, which showed that 16%

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of disabled women were divorced or separated compared with a generalpopulation figure of 7%. However, for disabled men the figure was 4%, suggestingthat marriages were much more likely to end if the woman, rather than theman, was disabled. Similarly, Parker (1993) found in her study of caring withinmarriage that it was often more disruptive when those more responsible forcare giving became disabled than when those more used to being cared forbecame disabled. Given the importance of gender in the experience of disability,there are likely to be consequences for the experience of parenting, and thedifferential ability of mothers and fathers to maintain a parenting role.Consequently, we became interested in the extent – if at all – to which familiesdealt with the disability of mothers and fathers differently.

Our numbers, particularly those of disabled fathers, are too small for statisticalanalysis; however, our qualitative analysis points to quite a heterogeneous pictureof gender roles, with a significant number of male partners engaged in full-time ‘caring’, often given the lack of alternative, well-paid employment options.Several male full-time ‘carers’ expressed resentment at the lack of financialsupport for their ‘caring’ role. However, we also encountered female partnerswho were equally resentful at the expectation that they should ‘care’ for theirdisabled husbands:

Basically, single parents get a lot more help than we do. At the end of theday I will become his carer as his MS gets worse. His mum and dad see mehere and assume I’ll do it all.Mother, dual-parent family (father, PI)

This is also important because, for this mother, the assumption that she will bea heavily involved carer since she is ‘the wife’ is attributable as much to theattitudes of other adults in the extended family as it is to any formal responsefrom social and other services.

Gender also intersects with the way in which parents are able to maintainand benefit from informal support. As we have already mentioned earlier inthis book, several mothers talked about the importance to them of contactwith other mothers. Those without access either to other mothers or theirown mother often felt the most isolated:

When I am depressed it would be nice to have my mum around, especiallywhen I see all the 24-year-old mums shopping with their mums.Mother (MHI), dual-parent family

Several parents also talked about the problems associated with the involvementof fathers in parenting. A father whose wife had both physical and mentalhealth impairments, and who also experienced health problems himself, wasconcerned for the wellbeing of his young daughter, and in particular heropportunities for social interaction with other children. He commented on

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Access to support

the difficulty he had in using mainstream facilities such as the local mother andtoddler group:

Yes, it would have been great for her [child] to go to playgroups, NCTcoffee mornings, or something. Most of the kids round here who are herage know probably a dozen or more kids of the same or similar age, youknow, and that’s because they go to these social things. I mean I started, Itook her once down to the mother and toddler group, and I was the onlyfella there, yeah, and it wasn’t a comfortable experience for me, so I justdidn’t do it again, you know. I didn’t feel comfortable with it, it wasn’t myplace to be. If there’d been like another half dozen dads, it would have beendifferent, but it wasn’t so it was just not an option, you know?Father, dual-parent family (mother, PI, MHI)

In this father’s case, the barrier to informal contact was based on assumptionsabout gender roles that implicitly undervalued fathering – it had nothing todo with his wife’s disability. Similarly, a major problem for one mother was thefact that, when her children were younger, baby-changing and other similarfacilities would often only be located in women’s toilets. The absence of placesfor her partner to change and toilet the children was identified as the keybarrier for the family, rather than the (in)accessibility of toilets for her.

Clearly, the ways in which disabled parents access support is heavily contingentupon other forms of social exclusion and on dominant ideologies aboutparenting, particularly those based on gendered assumptions about who doesand does not – as well as can and cannot – parent.

Support needs are mainstream but barriers are special:the principles of service response

Thus far, this chapter has explored the many complex and interacting ways inwhich disabled people experience difficulties in fulfilling parental roles. Whereasthe essential support needs of disabled parents are no different from those ofany parent – adequate income, suitable housing, access to transport and leisureactivities, and so on – the additional barriers faced by disabled parents canmake these needs more difficult to meet, both as parents as well as for thewhole family.

The support needs of families with disabled parents can be generated in amultiplicity of ways, while socioeconomic disadvantage, family shape, genderand other factors can interact subtly to structure the nature of parenting fordisabled people. It is vital, therefore, that support services be open, flexible,coordinated and responsive. They must see the support needs of disabled parentsas mainstream rather than ‘special’, and they must be offered in ways that straddlethe divides that exist between health, social care, transport, education, housingand other bodies. For example, one mother said she had tried to book anovernight stay with a large national chain of roadside motels and was told:

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“There are family rooms, accessible rooms, but not accessible family rooms”.Clearly, the response in policy terms to this kind of barrier should be muchbroader than is possible with a focus only on health and social care provision.An attack on the inaccessible way in which services are offered in the privatesector may well be more important in removing barriers for disabled parentsthan specific measures within health and social care agencies. In addition, thecocktail of factors structuring the way in which barriers are experienced willitself change over time as impairments, children, and relationships grow, changeand develop. (This is discussed in greater detail in Chapter Five.)

Most importantly, however, is the need for those offering support to disabledparents to be aware of the family context, and not simply individual need.During our interviews, many parents related tales of how GPs had signed themoff work for months at a time for severe mental health impairments, but withoutconsidering the impact at home on family relationships. However, we alsofound examples of support being offered in ways that were much more accessibleto disabled parents. For instance, we encountered parents who talked abouttheir GPs making home visits to children with relatively minor illnesses whowould ordinarily be expected to go to surgery, in recognition of the parents’mobility and transport problems. Most importantly, there should be an awarenessof the different ways – both from within and without – in which differentmembers of families can be supported. Several parents talked about the importantbenefits to the health of their partner that resulted from the provision of homecare and other services to them. Others talked about the important role thatformal services (such as family centres) and informal supports (such asgrandparents) provided, not only to them, but directly to their children bygiving them space to play, and a changed environment, among other things.

Above all, when parents talked about their need for support, it was in termsof their relationships, and their desire to maintain and underpin them. Peoplewould sometimes talk of feeling as though they had ‘half a wife’ or ‘half ahusband’. The partners of those parents that were inadequately supportedoften talked about ‘feeling like single parents’. Parents talked about feeling ‘leftout of parenting’, and of children growing up ‘always going to the other partnerfor affection’. Partners talked about the importance of commitment to eachother, in the face of adversity, and of not wanting to ‘farm out’ their partners.Partners emphasised that they wanted to remain a husband or wife, rather thanbecome a ‘carer’. These are relational issues, expressed in relational terms, whichserve to underscore the importance at a strategic level of basing formalintervention and support around the desire to protect and enable familyrelationships.

The following example illustrates the complex and relational nature of supportneeds. A South Asian family, living in a predominantly white area of a Midlandscity, had a mother with both physical and mental health impairments thatinvolved low confidence and self-esteem. Her husband was acting as a full-time ‘carer’ for his wife and had main responsibility for the day-to-day care oftheir two daughters, but could speak very little English. They felt isolated from

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Access to support

their extended family, which they felt did not even try to understand the natureof the mother’s mental health impairments. In addition, the husband hadhealth problems that would flare up periodically, leaving him unable to performhis usual roles of carer and father. The children had had problems at schooland the parents had faced a dilemma – whether the English-speaking mothershould risk her health by going to the school to sort them out, or whether thefather should try and sort them out, despite his minimal English-languageskills. In addition, the father expressed problems with parenting that intersectedwith the transition to adolescence of his daughters and associated genderdifficulties “in teaching them about being a woman”. The parents also mournedthe absence of grandmothers who could take on the role of guiding the daughtersthrough adolescence. In addition, language barriers existed, not only betweenthe family and the outside world, but also within the family, since the childrenspoke English but very little of their father’s mother tongue. At the time ofinterview, the family had recently returned home from a trip to India that wasintended to help the mother’s nerves. On their return, they found that theyhad been burgled, further denting the mother’s confidence in leaving the houseat all. The husband had asked for support from social services, but his effortshad got lost in the system. Apparently, this was the consequence of a series ofmisunderstandings between the professionals concerning who should returnhis calls and/or arrive to do assessments.

This is by no means a unique case in terms of its complexity and the involvedway in which different issues around physical and mental health impairments,ethnicity, gender, gender roles, age and gender of children, language barriers,and the local environment all interact. The challenge is to construct policy,practice and service options that are broad enough to encompass this complexityand depth and that are rooted, not in an individualised notion of care needs andsupport, but in the desire to promote and sustain family relationships. In addition,they must be able to respond to change (this issue is discussed in Chapter Five).

Direct payments and disabled parents: is the future bright?

In Chapter One, we discussed recent changes in the legislative framework thatgovern the ways in which disabled people can receive support. Of particularsignificance is the move towards the control of assistance on the part of disabledpeople themselves and the growth of direct payments provision, whereby disabledpeople can receive financial support in lieu of services provided directly bywelfare agencies. This, the argument goes, enables disabled people to purchaseassistance in more flexible ways, and in ways under the control of the disabledperson themselves. In the course of our research, we became interested to findout if any parents had made use of direct payments, or independent living fund(ILF) payments, to purchase support with the specific purpose of parentingactivity assistance.

Many families were unaware of what direct payments were and who theywere for. Given a generally low level of expectation with regard to their

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entitlement to support, we were not surprised to find that only one family inour study received direct payments. Some of those who were aware of thepotential benefits were often denied access to direct payments. One parentdescribed how she had been told that direct payments were restricted to thosewho needed more than 30 hours of care themselves. This is a clear indicationthat assistance with rearing children is not considered by her local authority tobe a need covered by direct payments provision (the rules governing the ILFspecifically exclude support for parenting activities). Another mother, whocould not access the upstairs of her home and had been sleeping on the sofa forsome years, also said that her application for direct payments had been turneddown on the ground that it was not meant to fund assistance with childcare.

Those who employed personal assistants, either through direct payments orthrough ILF payments, were generally very positive about this mode of support.The sole recipient of direct payments (a single mother with physical impairments)used it to fund one personal assistant; however, she also received an ILF thatafforded her a further four assistants. The assistants were viewed as friends,some of whom had been employed by her for a long period. As well asproviding her with personal assistance, she also spoke about the ways in whichthey gave her moral support for her parenting, and provided assistance in a waythat allowed her to maintain control. A further three disabled parents receivedmoney via ILF arrangements. One father talked about the unreliability thatresulted from receiving home care from an ever-changing set of private sectorcarers and care agencies. He reported that this unreliability only really endedwhen they were able to employ their own assistants funded through these ILFpayments. Other families saw direct payments as an important goal, citing theanticipated benefits in terms of the quality of life for the family as a whole:

I always have to make sure that someone is with my wife, or that I amcontactable and within easy reach at all times. That’s why we want directpayments, because if we get it, it will go towards supporting her mobility,someone to travel with her, to be there for panic attacks and so on, and forthe baby’s safety as well. It also means I am not so tied down as well.Father, dual-parent family (mother, PI, MHI)

Direct payments are still a relatively innovative way of providing support todisabled people. However, as awareness increases of the possibilities they offerfor flexible, holistic assistance for families, there will be increasing demands forthe inclusion of parenting as a legitimate activity of daily living for manydisabled adults.

Conclusions

Support is extremely important to all parents. However, accessing support isdifficult for many disabled parents. In this chapter, we have discussed the manyways in which support services and informal networks may be inaccessible. It

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Access to support

is important to emphasise once again, however, that the ‘needs’ of disabledparents are largely the same as those of non-disabled parents, and it is the socialand financial exclusion of many parents from a range of mainstream facilitiesthat serves to generate ‘special’ support needs. This is an important point forthose charged with developing policy and practice: the development of adiscourse, which takes as its starting point the implicit belief that disabled parentshave a particular and distinct set of support needs that therefore require theconstruction of specialist forms of welfare provision, will ultimately fail toaddress the essential fact that parenting is differentially accessible for disabledand non-disabled parents. We argue, rather, that the focus must remain on theremoval of barriers to participation in parenting and the creation of a morelevel playing field. We do not support the development of specialist branchesof welfare provision aimed at addressing what are spuriously believed to be‘special needs’ on the part of disabled parents.

However, we also argue that it is not simply a question of identifying therange of barriers that disabled people face, although these are of centralimportance. Rather, we argue that an appreciation of the way in which supportcan be made accessible to disabled parents must be dependent on anunderstanding of the complex ways in which disability interacts with a widerange of other factors in structuring the parenting experience of disabled people.For disabled parents, an understanding of the place of disability in their parentingand in the life of their family is inherently bound up with, among other things,consideration of the poverty and racism they may experience, as well as thedifferential ways in which parenting roles are made available to men and women.Indeed, we would go so far as to argue that the process of disablement is itselfunderstandable only when viewed from the perspective of these other forms ofsocial exclusion and disadvantage. This means that, while disabled parents as agroup share common experiences of barriers (the built environment, the wayin which services are offered, the negative assumptions concerning the parentingcapacity of disabled people), they also share experiences and forms of exclusionmore with non-disabled parents than disabled parents in more socioeconomicallyadvantaged positions, for example.

It is important, therefore, that policy and practice developments involvingdisabled parents are sensitive to the contingent place of disability in structuringthe parenting of disabled people. At a simple level, this involves taking care notto assume that every potentially negative aspect of family life – from divorcebetween parents to poor exam results and children’s behavioural problems –are necessarily related to parental disability. This was a point forcefully madeby many of the disabled parents in our sample. At a more sophisticated level, itrequires policy and practice that sees disabled parents both as a group definedby common experiences and as divided along much wider lines of socialexclusion.

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Note

1 Disability and parenting, however, may be experienced differently within differentethnic groups. Unfortunately, our study did not allow an in-depth examination of thisdimension.

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Children’s involvement in domestic and ‘caring’ work

FOUR

Children’s involvement in domesticand ‘caring’ work: new insights

Introduction

The origins of this book lie in a critique that we, and others, had made of theconceptual construction of some disabled parents’ children as ‘young carers’.(The historical background and key arguments of this critique were discussedin Chapter One of this book.) It is natural, then, that we would want to lookin detail here at the extent of children’s involvement in domestic and ‘caring’work, as well as the context in which it takes place.

We keenly avoid labelling family members as ‘carers’ or assuming that disabledparents do not themselves occupy ‘carer’ roles within the family. Our aim is toexplore the different factors that might influence not only the degree to whichchildren are involved in domestic and caring responsibilities, but also the natureof any involvement. This has necessarily included a concern with the ways inwhich formal and informal support mechanisms operate to encourage and/orlimit the involvement of children in ‘caring’ roles. (This follows directly fromthe arguments we made in Chapter Three concerning the difficulties disabledparents can face in accessing support.) It has also included a concern with theinfluence of a broad set of possible factors on children’s involvement, includingfamily shape as well as the age and gender of children. In the second half ofthis chapter qualitative data is used from our Stage One families to discuss thefactors influencing children’s involvement in caring and other work, withinthese four closely related theme clusters:

• parental dilemmas and strategies;• formal support and ‘young caring’;• informal support and ‘young caring’;• children as social actors.

In the first half of the chapter, however, we look at what the quantitative datacan tell us about the identification of children as ‘young carers’, their involvementin caring and domestic activities, and their relationship to variables such asgender, age, family shape and impairment group.

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Identifying ‘young carers’

Our research sample of parents was opportunistic, and cannot be said to berepresentative of the general population of disabled parents in the UK. In anycase, knowledge of the size and characteristics of this broader group is extremelylimited. We do not claim, therefore, that the quantitative data presented herepaint a picture that is more widely applicable to disabled parents elsewhere. Inaddition, ‘young carer’ projects have been specifically excluded as a source ofrecruitment (although some children were identified by themselves or by theirparents as ‘carers’, and some received specific ‘carer’ support). Our decisionwas based on a commitment to maintaining a parent-centred focus, as well ason a concern not to overrepresent families that identified a child as a ‘youngcarer’1.

‘Carers’ and ‘caring’ activity

Disabled parents interviewed at Stage One were told that there has “recentlybeen a lot of talk about ‘young carers’, children who help to care for a parent”,and were then asked: “Would you consider (your child) to be a ‘young carer’?”As we discuss in Appendix One, target children were in most instances chosenat random from all children aged 7-18 in the family. Around one third ofparents (21 out of 66) said that they considered the target child to be a ‘youngcarer’ (see Table 4.1). In addition, however, our pilot work had indicated thatwe should also enquire as to whether or not children who were not thought ofas ‘young carers’ were nevertheless engaged in ‘caring’ activities. Approximately

Table 4.1: Parent-identified ‘carer’ status of target child

Would you consider If no/don’t know/refused,him/her to be is he/she involved in any

a ‘young carer’? ‘caring’ activities?

Number % Number %

Yes 21 31.3 23 34.3

No 41 61.2 22 32.8

Don’t know 3 4.5

Refused 1 1.5

Not applicable 1 1.5 22 32.8

Total 67 100.0 67 100.0

Target child is:

a ‘young carer’ 21 31.3

involved in caring activity 23 34.3

not involved in caring activity 22 32.8

not applicable (no child in house) 1 1.5

Total 67 100.0

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half of those parents (23 out of the remaining 45 parents) who thought thatthe child in question was not a ‘young carer’ did think that he or she wasinvolved in caring activities. This left us with a roughly equal three-way splitbetween target children regarded as ‘young carers’, children involved in caringactivities (but not labelled ‘young carers’), and those reported to have noinvolvement in caring (Table 4.1).

Child characteristics and ‘caring’ status

Table 4.2 shows that older children (ages 12-19) are no more likely to belabelled ‘young carers’ than younger children (ages 4-11). On the face of it,this is a surprising result, as we might expect children’s involvement in domesticwork to increase with age. The result is especially interesting, given that parentshave also reported much less involvement in task-by-task caring and domesticwork by younger children than by older children (see Table 4.6). The apparentcontradiction is important since it indicates that parents’ use of the label ‘youngcarer’ is, at best, only partially related to what children actually do, and is perhapsmore related to broader social relations within the family. (Qualitative analysissheds more light on the different ways in which the domestic work of younger

Table 4.2: Proportion of target children identified as ‘young carers’or involved in ‘caring’ activity (by age, sex and parental impairmentgroup)

Child details

Age Sex

Number 4-11 12-19 Mean Median Range M F

‘Young carer’ 21 8 13 12.86 14 7-17 12 9

Involved in ‘caring’ 23 11 12 10.91 12 4-18 11 12

No ‘caring’ activities 22 7 15 12.32 13 5-19 8 14

Total 66 26 40 66 66 66 31 35

Parental details

Primary impairment Mental healthgroup impairments present?

Number PI/Sensory MHI No Yes

‘Young carer’ 21 17 4 8 13

Involved in ‘caring’ 23 16 7 13 10

No ‘caring’ activities 22 12 10 12 10

Total 66 45 21 33 33

PI = Physical impairmentMHI = Mental health impairment

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children is constructed. This is discussed in greater detail later in this chapter.)Table 4.2 also shows that the sex of the target child bears no relationship to thelikelihood of that child being labelled a ‘young carer’ or as a child involved in‘caring’ activities. This finding is consistent with Dearden and Becker’s (1998)survey of children attending ‘young carer’ projects.

Impairments and ‘young caring’

Although there was no statistically significant difference between impairmentgroups in the extent to which parents identified their target child as a ‘youngcarer’, parents with physical impairments were more likely to identify theirchildren in this way. Under one fifth of parents with primarily mental healthimpairments labelled the target child as a ‘young carer’ – yet this rose to 40%for physically impaired parents. Beyond this, no significant differences werefound between parents with mental health impairments and those without(Table 4.2).

Family shape

An important issue in the ‘young caring’ debate is the extent to which singleparents are less able to protect children from involvement in ‘caring’ (seeAppendix One). In other words, does the presence of a partner (disabled ornon-disabled) make it easier for families to meet the support needs of thedisabled parent without recourse to including children? Table 4.3 breaks downthe ‘young carer’ status of the target child according to family shape. For the

Table 4.3: ‘Young carer’ status of target child (by parentalimpairment group and family shape)

Involved in Not involved‘Young ‘caring’ in ‘caring’carer’ activities activities Total

Impairment group

Physical/sensory impairmentsDual parent 10 12 9 31Single parent 7 4 3 14Total 17 16 12 45

Mental health impairmentsDual parent 2 4 7 13Single parent 2 3 3 8Total 4 7 10 21

AllDual parent 12 16 16 44Single parent 9 7 6 22Total 21 23 22 66

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sample as a whole, and for each primary impairment group, single parents weremore likely to describe the target child as a ‘young carer’. That is, nine out of22 single parents described their child as a ‘young carer’, whereas this was thecase in only 12 out of 44 parents in dual-parent families. Similarly, differencesoccurred between the level of involvement in various ‘caring’ activities of childrenin single-parent, as opposed to dual-parent, families (discussed in greater detaillater in this chapter).

Rhetoric and reality: what do children actually do?

Our research has shown that about a third of the disabled parents in our studyconsidered at least one of their children to be a ‘young carer’. Here we brieflyconsider the relationship between this finding and children’s actual involvementin ‘caring’ and domestic work, as well as the contact families had with ‘youngcarer’ organisations and services.

Children’s involvement in domestic work

To what extent does parental identification of children as ‘young carers’ – ortheir involvement in ‘caring’ activity – correspond to reported levels ofinvolvement in both housework and care tasks? Our parent questionnaireasked about target child involvement in a broad range of household tasks:cooking, cleaning, washing up, changing bed clothes, shopping, laundry washing,ironing, vacuuming, and picking up any other siblings from school (Table 4.4).(Information on caring tasks of a more personal nature was collected in aslightly different way and we discuss these data later in this chapter.) Very few

Table 4.4: Parental reports of target child’s involvement in domesticwork

Regularand main

Never Sometimes Regular responsibility Total

1. Cooking for family 35 26 3 2 66

2. Cleaning bathroom 54 11 0 1 66

3. Washing up 35 20 8 3 66

4. Changing bed clothes 40 22 2 2 66

5. Shopping 24 32 10 0 66

6. Washing clothes 46 17 3 0 66

7. Ironing 52 14 0 0 66

8. Vacuuming 40 22 3 1 66

9. Fetch siblings from school 65a 1 0 0 66

a Including those with no school-age younger siblings

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children were reported to have regular involvement in activities other thanshopping or washing up; fewer still assumed the main responsibility for any ofthese activities.

We wanted to carry out further analysis that differentiated between high andlow involvement in domestic work. Therefore, an overall ‘level of involvement’score was generated for each target child, by attributing four points for eachactivity in which he or she had main responsibility, three for regular involvement,two for occasional involvement and one where he or she had no involvement.The score for each child could range, then, from nine (no involvement in anytask) to 36 (regular involvement and main responsibility for all nine tasks). AsTable 4.5 shows, this allowed us to sub-divide the target children into fourgroups with regard to total levels of involvement.

• low;• low to medium;• medium to high;• high.

We can see in Table 4.6 that those children identified by parents as ‘youngcarers’ were unlikely to have a low involvement in household activity. However,a similar proportion of those identified as ‘young carers’, as well as those reportedto be involved in ‘caring activity’, had a medium-to-high or high level ofinvolvement. It is also interesting to note that all of the children reported tohave a high level of involvement had a parent (or parents) with primarilyphysical impairments. Furthermore, living in a dual-parent household increasedthe chances of a child having a low level of involvement – only one out of 22children lived in single-parent households, compared with 12 children in 44dual-parent households, were reported as having low involvement. Again, thesedifferences were not found to be statistically significant.

It appears, then, that the increased (though not statistically significant)likelihood of single parents labelling a target child as a ‘young carer’ is borneout when one examines the child’s actual levels of involvement in domesticwork. However, in other areas the label appears less related to what children

Table 4.5: Level of involvement of target child in domestic work

Target childrenPoints (total number) Level of involvement

9 13 Low

10-12 23 Low to medium

13-16 22 Medium to high

17-24 8 High

Total 66

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actually do. For instance, Table 4.6 shows that older children are more likely tohave medium-to-high and high levels of involvement (23 out of 40) comparedwith younger children (seven out of 26). However, Table 4.2, as we saw earlier,demonstrated no difference in the extent to which the label ‘young carer’ wasapplied by parents to older and younger children. Similarly, Table 4.6 illustratesthat high levels of involvement were limited to children of parents with primarilyphysical impairments, although Table 4.2 showed that impairment group hadlittle bearing on whether parents considered their target child to be a ‘youngcarer’. Again, these data indicate that the construction of a child as a ‘youngcarer’ is often minimally related to what children actually do by way ofhousework.

Children’s involvement in ‘caring’ work

It was relatively straightforward to inquire about the range of household tasksthat a target child may be involved in, since these are tasks typical to mosthouseholds. However, we could not assume that parents would have anyadditional care needs. Therefore, a more sensitive way had to be devised to askabout the need for – and provision of – personal care. To do this, we adaptedthe Meltzer’s (1995) Psychiatric Morbidity survey, such that, for a range ofareas, parents were asked whether or not they had any personal assistance needs,as well as who, if anyone, provided that assistance. It was possible, therefore, toassess the number of parents who described one or more of their children asassisting with these caring activities. We created these summary variables todescribe the support received in each of the nine ‘caring’ tasks:

Table 4.6: Involvement in household tasks (by reported ‘young carer’status, age, parental impairment group and family shape)

Level of involvement

Low to MediumLow medium to high High % Total

‘Young carer’ status‘Young carer’ 1 6 9 5 31.8 21Caring activities 4 8 8 3 34.8 23No caring activities 8 9 5 0 33.3 22

Target child age4-11 9 10 6 1 39.4 2612-19 4 13 16 7 60.6 40

Impairment groupPhysical/sensory impairments 7 16 14 8 68.2 45Mental health impairments 6 7 8 0 31.8 21

Family shapeDual parent 12 15 13 4 66.7 44Single parent 1 8 9 4 33.3 22Total 13 23 22 8 100.0 66

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• no help required;• help required but none received;• help received from formal/informal support only;• help received from children with other formal/informal support;• help received from children only.

Our nine ‘caring’ tasks:

1.personal care;2. transport;3.medication;4.household chores;5. practical tasks;6.paperwork;7. financial matters;8. checking you are OK;9.dealing with outside agencies.

Table 4.7 gives a breakdown of our sample for each of the nine ‘caring’ tasks,and for the five summary variables listed above. The first thing to note is thehigh number of parents who described themselves as ‘requiring no assistance’with most of the tasks identified, and especially with personal care tasks. Hence,while children were involved in household chores in 23 families (usuallyalongside other sources of support), only eight families reported children ashelping with personal care, and only 10 families reported children assistingwith medication. It is also interesting to note that parents identified as animportant area of unmet need having someone who could check that theywere alright.

These data also point to very low levels of child involvement in providingassistance to parents with mental health impairments. Whereas we might haveexpected, in the previous section on domestic work, lower levels of involvementfrom these children, we here expected to pick up greater involvement whenlooking at ‘caring’ tasks such as helping with medication and checking thatparents were OK. Our result was a sample of parents with mental healthimpairments reporting little requirement by way of assistance. This possiblyreflects the characteristics of the sample, in particular that they had relativelymoderate mental health impairments and/or were recruited and interviewedduring a period of relative good mental health.

In addition, Table 4.7 suggests that family shape is important in determininglevels of child involvement. Where children were involved in household andcaring tasks, this involvement was typically alongside other sources of formaland/or informal support for children in dual-parent families, but tended toinvolve sole involvement on the part of the child in single-parent families. Thisfinding is supported when one examines some of the areas of possible supportneed in more detail.

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Table 4.7: Child involvement in our nine ‘caring’ tasks (by familyshape and impairment group)

‘Caring’ tasks

Do you need 1 2 3 4 5 6 7 8 9help with:

ALLNo help 37 25 44 13 17 35 54 26 39required

Help required, 3 2 2 6 7 4 7 12 4none received

Help received from:

Formal/informal 19 32 11 25 39 23 6 19 24support only

Child[ren] with 4 4 6 19 3 3 0 7 0other formal/informal support

Child[ren] only 4 4 4 4 1 2 0 2 0Not answered 0 0 0 0 0 0 0 1 0

Total 67 67 67 67 67 67 67 67 67

Family shape (dual/single)No help 23/14 15/10 29/15 10/3 12/5 24/11 35/19 23/3 30/9required

Help required, 1/2 2/0 1/1 3/3 5/2 3/1 4/3 6/6 2/2 none received

Help received from:

Formal/informal 16/3 23/9 8/3 22/3 27/12 15/8 5/1 10/9 12/12support only

Child[ren] with 2/2 4/0 5/1 9/10 0/3 2/1 0/0 4/3 0/0other formal/informal support

Child[ren] only 2/2 0/4 1/3 0/4 0/1 2/0 0/0 1/1 0/0Not answered 0/0 0/0 0/0 0/0 0/0 0/0 0/0 0/1 0/0

Dual/single 44/23 44/23 44/23 44/23 44/23 44/23 44/23 44/23 44/23

Impairment group (physical and/or sensory/mental health)No help 16/21 9/16 25/19 3/10 5/12 20/15 40/14 18/8 27/12required

Help required, 3/0 1/1 2/0 4/2 6/1 3/1 2/5 8/4 3/1 none received

Help received from:Formal/informal 19/0 28/4 11/0 17/8 31/8 19/4 4/2 11/8 16/8support only

Child[ren] with 4/0 4/0 5/1 18/1 3/0 2/1 0/0 7/0 0/0 other formal/informal support

Child[ren] only 4/0 4/0 3/1 4/0 1/0 2/0 0/0 2/0 0/0Not answered 0/0 0/0 0/0 0/0 0/0 0/0 0/0 0/1 0/0

Physical and/ 46/21 46/21 46/21 46/21 46/21 46/21 46/21 46/21 46/21or sensory/mentalhealth

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Table 4.8 illustrates a statistically significant association between family shapeand the involvement of children in household chores.

Children in single-parent families were approximately three times more likelyto be assisting with chores than children in dual-parent families (61% as opposedto 20%). This association is also found in other areas. For instance, the datasuggest that children in single-parent families were much more likely to beassisting with practical tasks than those in dual-parent families (Table 4.9),although the generally low level of involvement means that we must be cautiouswhen interpreting the statistical result.

Table 4.7, as we have seen, also shows lower levels of involvement in caringtasks on the part of the children whose parents have mental health impairments,including checking that their parent was OK. These data suggest that childrenare only likely to be involved in assisting physically disabled parents – involvementin assisting parents with mental health impairments, therefore, is extremelyrare. (This is especially interesting, given that we used the Psychiatric Morbiditysurvey in order to capture and measure the need for assistance of parents withmental health impairments.)

Table 4.8: Child involvement in helping with household chores (byfamily shape)

Dual parent Single parent Number

No child helps 35 9 44with chores

At least one child 9 14 23helps with chores

Total 44 23 67

Table 4.9: Child involvement in helping with practical tasks (by familyshape)

Dual parent Single parent Number

No child helps with 44 19 63practical tasks

At least one child 0 4 4helps withpractical tasks

Total 44 23 67

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The greater likelihood of the children of physically disabled parents beinginvolved in particular types of ‘caring’ (albeit in the context of generally lowlevels of involvement) is reproduced when areas of potential support need areanalysed in more detail. Table 4.10 illustrates a significant – but unsurprising –association between impairment group and the involvement of children inpersonal ‘care’.

This statistically significant association between parental impairment andchildren’s involvement in providing assistance extends to help with getting outand about and using transport, and assistance with household chores (Table4.11).

The finding is very clear: almost half of parents with primarily physicalimpairments described some child involvement in providing assistance withchores; yet only one out of the 21 parents with primarily mental healthimpairments did so.

Our data, then, suggest a strong association between physical impairmentand child involvement2. It can reasonably be speculated that this was becauseparents currently experiencing severe mental health impairments were less likelyto take part in the research than those who felt their illness was in the past, orat least not greatly affecting the present. It may also be because parents withmental health impairments were less likely to identify support needs in the firstplace.

Table 4.10: Child involvement in assisting with personal ‘care’ (byimpairment group)

PI/Sensory MHI Number

No child helps with 38 21 59personal ‘care’

At least one child 8 0 8helps withpersonal ‘care’

Total 46 21 67


Table 4.11: Child involvement in assisting with household chores (byimpairment group)

PI/Sensory MHI Number

No child helps 24 20 44with chores

At least one child 22 1 23helps with chores

Total 46 21 67


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It is to be expected, then, that they then went on to report lower levels ofinvolvement on the part of their children. Their reluctance to identify supportneeds is an important issue, and reinforces Chapter Three’s discussion concerningthe (reduced) likelihood of parents with mental health impairments seeing‘support’ as something they thought they needed, or at least as something thatthey would be entitled to. Or, finally, it may be that as researchers we were lessskilled in enabling parents with mental health impairments to make a connectionwith their experience of illness on the one hand, and the possible need forassistance on the other. It is inherently easier to engage parents who identifyphysical support needs than it is to engage parents for whom the relationshipbetween impairments and assistance is more complex.

Something that really caught our attention was the fact that, despite thesestrong differences in what parents report children as actually doing (see Table4.7), there was no significant difference between the likelihood of physicallyimpaired parents and those with mental health impairments labelling the targetchild as a ‘young carer’. Again, this suggests that the relational context of thegiving and receiving of assistance is more important than the actual ‘doing’ ofhousehold and other ‘caring’ work.

Children’s perspective on domestic and ‘caring’ work

It was important to us that what children thought about their involvement indomestic and ‘caring’ activity was reported in our study. The views of childrenhave value in their own right, of course; we were also interested, however, tosee when (if at all) the perceptions of parents and children tallied.

The responses of the 60 children interviewed are presented in Table 4.12.Comparing the reports of children with those of their parents (presented inTable 4.5), children report greater involvement for each of the areas identified,the sole exception being cooking a hot meal for the family. In addition, fromthe child’s perspective, their involvement is ‘regular’, rather than ‘sometimes’.It is important to understand that both the children and parents in our studywere giving subjective reports of child involvement in domestic and caring work.Our data were not gathered prospectively (for instance, using diaries ortimesheets). It is likely, then, that both within and between these groups thenotion of ‘regular’ and ‘occasional’ involvement differs. In particular, whatchildren consider ‘regular’ involvement may instead be reported by their parentsas ‘occasional’ involvement. It is also possible that the reports of children andparents are mediated by a concern to conform to particular norms. For example,parents may be sensitive to the public perception that they rely too heavily ontheir children (and may therefore tend to underestimate child involvement).Children, on the other hand, may want to emphasise their helpfulness withinthe home (and may therefore tend to overestimate their involvement).

In terms of personal care, some comparisons can be drawn between children’sreports and parental responses to our questions adapted from the PsychiatricMorbidity survey. For example, 12 of the children reported helping with

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dressing, either on a ‘regular’ or ‘sometimes’ basis (Table 4.12). Similarly, 13children reported ‘sometimes’ helping their parent to wash or bathe. However,only eight parents reported any involvement by any child in personal care(Table 4.7). Similarly, only 10 parents reported any child involvement in assistingwith medication (Table 4.7), while 15 children reported ‘sometimes’ helping,and six reported ‘regular’ involvement (Table 4.12). There is an even greaterdisparity when one compares the number of children who say they stay in tokeep their parent company and parental reports of a child either ‘checking’that they are OK, or staying in to be with them. Three children said that they‘regularly’ stayed in with their parent to keep them company, and 35 said thatthey ‘sometimes’ did so (Table 4.12); only nine parents reported childinvolvement in this area (Table 4.7)3.

Our interest in whether or not the reports of parents and children tallied wasto emphasise children’s and parents’ understanding of their involvement in ‘caring’and other work. Perhaps it is not surprising, then, that each group interprets‘care’ differently. (However, the data we have presented suggest that disparitiesdo exist in the extent to which parents and children report patterns ofinvolvement. These disparities merit a study all of their own, but one that willhave to wait for another day.)

Table 4.12: Children’s reported level of involvement in household and‘caring’ tasks

Regularinvolvement Sometimes Nevera Total

Make your own bed 23 28 9 60Make other people’s bed 2 20 38 60Cook a hot meal for the family 6 21 33 60Do the shopping(including going to the corner shop) 19 26 15 60

Do the vacuuming 10 38 12 60Clean the bathroom 3 20 37 60Wash up (including dishwasher) 10 38 12 60Help parent with stairs 5 12 43 60Help parent with medication 6 15 39 60Help parent with dressing 3 9 48 60Stay in to keep (disabledparent) company 3 35 22 60

Help parent to wash or bathe 0 13 47 60Cook for parent 6 28 26 60Help parent go to the doctors 3 17 40 60Do the ironing 2 17 41 60Look after siblings 9 18 33 60Fetch younger siblings fromschool/nursery 0 7 53 60

Wash clothes (including loadingwashing machine) 8 28 24 60

a Including ‘not applicable’.

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Table 4.13 presents children’s reported involvement in greater detail. Fromit, we see that 14 out of 21 target children in single-parent families reportedcooking hot meals for the family, as compared with 13 out of 39 target childrenin dual-parent households. Similarly, 17 out of 21 target children in single-parent families reported specifically cooking for their disabled parent, comparedwith 17 out of 39 target children in dual-parent households. Children insingle-parent families also report greater involvement in helping with shopping.More accurate data could be gathered if more specific questions on the numberof times per day, or per week, that children perform certain tasks were asked.However, it is clear that when children are asked about involvement in specificsets of tasks, they – like their parents – report higher levels in single-parentfamilies than dual-parent families.

Table 4.13 also highlights some differences between children of parents withprimarily mental health impairments and children of parents with primarily

Table 4.13: Children’s reported involvement in tasks (by family shapeand impairment group)

Family shape Impairment group

Dual (39) Single (21) PI/sensory (42) MHI (18)

Does task Does task Does task Does task

Make your own bed 35 16 38 13

Make other people’s bed 16 6 18 4

Cook a hot meal for the family 13 14 21 6

Do the shopping (including 26 19 31 14going to the corner shop)

Do the vacuuming 31 17 35 13

Clean the bathroom 18 5 17 6

Wash up (including dishwasher) 31 17 34 14

Help parent with stairs 12 5 17 0

Help parent with medication 13 8 19 2

Help parent with dressing 6 6 12 0

Stay in to keep (disabled 27 11 30 8parent) company

Help parent to wash or bathe 7 6 13 0

Cook for parent 17 17 26 8

Help parent go to the doctors 13 7 16 4

Do the ironing 15 4 13 6

Look after siblings 21 6 17 10

Fetch younger siblings 4 3 5 2from school/nursery

Wash clothes (including loading 24 12 26 10washing machine)



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physical and/or sensory impairments. For example, children of parents withphysical impairments reported a greater level of involvement in terms of helpingtheir parent with medication. It is also interesting to note that they were alsomore likely to stay in to keep their parent company, given that violence andobservation on the part of children whose parents have mental healthimpairments are frequently cited in the literature on ‘young caring’.

‘Young carer’ service provision

Disabled parents were told that “in some areas there are ‘young carers’ groupsthat organise activities and provide support for children who have a disabled orill parent”. They were then asked whether or not there was such a group intheir area. Nineteen parents knew of a ‘young carer’ group (and half of theseparents had identified their child as a ‘young carer’). As Table 4.14 shows, amajority of parents (36) were not aware of such a service in their area (onethird of these identified their target child as a ‘young carer’)4. This suggests thatthose parents who knew about a ‘young carers’ group in their area were morelikely to define their child as a ‘young carer’. This could reflect one of twothings. Firstly, parents who identified their target child as a ‘young carer’ weremore likely to have come into contact with professionals who might referchildren to the local project, or at least provide information about it to thefamily. Or, secondly, it could be that awareness of a local ‘young carer’ groupmight encourage parents to think of their children as ‘young carers’, irrespectiveof their involvement in household and caring activity. For instance, parentsmay see ‘young carer’ as a label that increases the chance of their childrengaining access to the facilities on offer at such projects.

There were no significant differences between parents with physicalimpairments and parents with mental health impairments with respect to

Table 4.14: Knowledge of a ‘young carer’ group in the area (by ‘youngcarer’ status, primary impairment group and family shape)

Is there a ‘young carer’ group in your area?

Yes No Don’t know % Total

‘Young carer’ status‘Young carer’ 10 1 10 32.3 21Involved in caring activities 2 6 14 33.85 22Not involved in caring activities 7 3 12 33.85 22

Impairment groupPhysical/sensory 14 7 24 69.2 45Mental health 5 3 12 30.5 20

Family shapeDual parent 10 7 26 66.2 43Single parent 9 3 10 33.8 22Total 19 10 36 100 65

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awareness of the existence of ‘young carer’ projects locally. Our data, however,suggest that single parents were more likely to be aware of the existence of alocal ‘young carer’ project than parents in dual-parent households (although,again, the finding is not statistically significant).

Table 4.15 gives a breakdown of the attendance at ‘young carer’ groups ofthe target children in our sample. It shows that one third of those labelled as‘young carers’ were in fact attending a ‘young carers’ group. No difference wasfound between the likelihood of the children of physically impaired parentsattending a ‘young carer’ group compared with the children of parents withmental health impairments. However, our data suggest that the children ofsingle parents were more likely to attend a ‘young carers’ group than childrenin dual-parent households.

In sum, then, the quantitative data suggest that children’s involvement in‘caring’ and domestic work is generally low. Furthermore, the use of the label‘young carer’ is often unrelated to what children actually do. This is reflected,for instance, in the fact that no difference was found in the extent to whicholder and younger children were labelled ‘young carers’, despite the fact that,according to parents’ reports, the actual involvement of older children in arange both of domestic and ‘caring’ activities was higher. It also appears thatthe children of single parents are consistently reported both by themselves andtheir parents to be involved in greater amounts of domestic and caring workthan the children of dual-parent families. (However, the small numbers involvedmean that statistical significance is rarely reached.) We also found gaps in theextent to which parents and children reported children’s levels of involvement– that is, children consistently reported higher levels than their parents did.

Finally, the data on developmental and self-care skills collected through useof questions from the Looking After Children (LAC) schedules (see Appendix

Table 4.15: Attendance at ‘young carer’ groups (by ‘young carer’status, primary impairment group and family shape)

Does (target child) attend a ‘young carers’ group?

Yes No % Total

‘Young carer’ status‘Young carer’ 7 14 32.3 21Involved in caring activities 0 22 33.85 22Not involved in caring activities 0 22 33.85 22

Primary impairment groupPhysical/sensory 5 40 69.2 45Mental health 2 18 30.8 20

Family shapeDual parent 3 40 66.2 43Single parent 4 18 33.8 22Total 7 58 100.0 65

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Two) suggest that the children of the disabled parents in our sample arecomparable with those in the broader, general population. In particular, thereis no evidence that children of disabled parents are unusually advanced, or‘falsely mature’, in their acquisition of developmental and self-care skills.

‘Young caring’ in context

The first half of this chapter discussed quantitative data on children’s contributionto domestic and ‘caring’ work. Our interviews, however, also generated awealth of qualitative material on the context of children’s involvement (ornon-involvement) in this work, and the meaning and significance given to itby family members. The starting point is the fact that parents were, on thewhole, very well aware of the public debate surrounding ‘young caring’, andconsistently expressed the desire to minimise involvement of children inassistance:

I am very conscious to keep them out of my care. I very occasionally wouldask them to do things, but only if nobody else could. I can care for myselfand there are usually other adults able to help out.Mother (PI), single-parent family

In another family, the father had sole responsibility for all household work andwas concerned about the impact of any caring responsibilities on his children’sschoolwork and exam preparation:

Housework is not shared out in this family, I basically do it all and sometimesI’m unhappy about that. But deep down it’s what I want, to leave the kidsfree to get on with their lives, they work hard in their own right with theirGCSEs coming up.Father, dual-parent family (mother, PI)

Other parents described their anxiety about the level of responsibility thatwould be involved if their children took on caring roles. One mother, whodescribed her son as a ‘young carer’, said:

When I feel grotty he’ll get milk from the shop – that’s important to me asI live on cereals and if I asked him he’d do it. He’s here all the time.... Itmight make him more ‘caring’ or more understanding when he’s older butI don’t know if he feels responsible for me. I don’t want him to feel thatway.Mother (MHI), single-parent family

As we have already said, most parents were aware of the term ‘young carer’, andwere keen to point out ways in which they had prevented overinvolving theirchildren in care. They expressed anxiety about the amount of help required of

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their children, and pointed to the factors that helped or hindered them inpreventing children from taking on what might be seen as ‘caring’ roles.

Our analysis of the data from Stage One interviews led us to cluster theperspectives of disabled parents around four closely related themes. Theseinvolved:

• the dilemmas faced, and strategies adopted, by disabled parents in preventingchild involvement in caring;

• the role that formal sources of support play in protecting children fromtaking on, or alternatively encouraging children to adopt, caring roles;

• the influence of features of informal support networks that help to preventchildren from inappropriate caring roles;

• seeing children’s contribution to domestic and caring work as somethingthat is negotiated and contested, and which therefore depends also on theactive role of children in taking on and/or resisting involvement in caringand other work, and not solely on the presence or absence of other forms ofsupport.

It is to each of these themes that we now turn, to examine them in more detail.

Disabled parents and ‘young caring’: dilemmas and strategies

Many parents in our sample expressed the desire to see their children grow upwith the skills needed for independence. This was expressed in terms of the‘normal’ expectations that parents have for their children. For some, however,particular decisions had to be taken and strategies followed regarding childinvolvement in ‘caring’ and other work. This was most often expressed interms of a dilemma between what needed to be done in the house and what theright level of involvement for children should be. Responses to these dilemmaswere varied. One partner said:

I think it’s unfair to expect too much of them. I’d rather have things notdone than put more pressure on people who already feel put upon.Father, dual-parent family (mother, PI)

Other parents talked about the detriments to their own health that resultedfrom making sure their children were not overinvolved.

I don’t want to turn my children into carers, so I probably do more than Ishould.Mother (PI), single-parent family

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Why aren’t my children young carers? Well, when I’m ill, I’ve always triedand managed to do as much as I can so they don’t have to, things likecooking and cleaning.Father (MHI), dual-parent family

Disabled parents often talked about the impact on their health of these kinds oftrade-offs – between the need for assistance on the one hand, and the need tolimit requests from family members (including children) for support on theother. This was particularly so for those families who described hostile andcontested relationships with formal support agencies. One mother had resistedthe decision by social services to put her children on the ‘at risk’ register, andfor one of them to be placed in voluntary care. For her, a public perceptionthat she depended on her children for support would only fuel the socialservices’ desire to instigate child protection action. Instead, her strategy includedreliance on microwaveable food, since she had difficulty in chopping vegetablesand opening tins, even though she was concerned about the effect of such adiet on the health of all family members. Similarly, she was also upset at thepoor state of her garden:

But I would rather have grass six foot in the air, than have people think I amgetting my kids to do too much.Mother (PI, MHI), dual-parent family

Other parents talked about the ‘rules’ that they had developed in order to limitand manage the degree to which children could (or did) take on ‘caring’ roles.For example, when a hot meal was being cooked, a single mother and herdaughter had made an arrangement whereby the mother would position herselfat the cooker and take control of stirring and managing the heat, while thedaughter did all the chopping, laying the table, and so on. Another family hadrules concerning the children being in the house when the only adult presentwas the disabled mother. The mother said that the decision not to involvechildren in ‘caring’ was deliberate and part of an ‘agreement’ with her husband.However, this decision also involved limitations on her freedom, as her husbandillustrated:

Basically, on Saturdays, when I take the lad to play football, we have a rulethat if she [mother] is out of bed and downstairs before I go, then she muststay downstairs, and if she isn’t yet up, she mustn’t get up until I come back.Otherwise the youngest two are going to be at home and dealing with herfalling down the stairs.Father, dual-parent family (mother, PI, MHI)

We can see how parents have adopted strategies that allow them to retain asense of control over their family life, but which also involved trade-offs. Onesingle mother in our sample had decided to put her bed in her living room,

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since she had difficulty using the stairs and was already locked in a battle withthe local authority regarding the provision of a downstairs bedroom extension.She acknowledged that this restricted her children’s ability to bring their friendshome, and also involved leaving them unsupervised upstairs, with associatedimplications for their safety. However, it was more important for her to locateherself centrally and not to feel shut away in an upstairs bedroom on dayswhen she could not get out of bed. This mother did identify her son as a‘young carer’ and talked about the number of schooldays he and the otherchildren had missed. However, she attributed this more to the inaccessibility ofthe upstairs of the house than to any ‘caring’ responsibilities they took on: sheoften found it very difficult to make sure they got up and ready for school ingood time.

Another example highlights the difficult dilemmas that some families face inusing available informal support to minimise children’s involvement in caring.One partner was the family’s full-time ‘carer’, despite some formal input for hisdisabled wife and disabled daughter. His poor health was a major concern, andthere was a constant fear of what would happen if his own health problemsworsened:

If I am having a bad day, then I just have to crash out, leaving the otherswith no one to look after them. If my health really fails, then what willhappen? I’m worried that all I will be offered is residential care for both ofthem. This is where my son steps in. Ordinarily his life isn’t really affectedat all, although I would like to be able to get to his football matches more,but often I’ll need him to step in and just be in the house while I have to goout shopping, for instance.Father, dual-parent family (mother, PI)

Gender roles compounded the difficulties faced by this family. The husbandwas in the position of providing personal care to his wife and his 16-year-olddaughter. Both he and his wife were extremely uneasy about him havingpersonal care responsibilities for a teenage daughter:

What do you do when she doesn’t want you to change her [sanitary towel]?If you ignore her saying ‘no’, it could easily be seen as abuse. If you leave italone, it could be seen as neglect.Father, dual-parent family (mother, PI)

Faced with such dilemmas, the family was trying to minimise the impact ontheir other, non-disabled child, in terms of his involvement in caring,demonstrating the complex factors that underlie attempts by families to minimisechild involvement in caring work:

I have to be constantly aware of not leaving my wife and daughter alone.This means that spontaneity goes out of the window, as I always have to

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make sure that someone is there with them. It also means I miss out onseeing my lad play football on the weekends.Father, dual-parent family (mother, PI)

Parents are acutely aware, then, of the need to prevent overinvolvement of theirchildren in domestic and caring work. This supports Parker’s work (1993),which points to the great efforts made by disabled people to prevent andminimise the impact of disability on family members, and children in particular.Various strategies are deployed in their attempts to do this, including increasedresponsibility for the other parent (in dual-parent families), the overexertion ofdisabled parents (often in ways detrimental to their own health), and themanagement of household tasks in practical ways that minimise children’sinvolvement.

Formal support and ‘young caring’

Many dilemmas faced by disabled parents are underscored by an absence ofappropriate services, adaptations and support from formal agencies. For example,in the case of the mother who needed to relocate her bed to the living room(discussed earlier in this chapter), her dilemma is structured by the failure ofher local authority to deal with the inaccessibility of her house. In this section,we examine our data concerning the relationship between the availability offormal support and the nature of children’s involvement in caring and otherwork.

It is important to recognise at the outset that a small number of parents livedin houses that were fully accessible and adapted to their needs, enabling themto carry on parenting and take responsibility for housework and self-care withoutthe need for formal support at all. One physically impaired mother had acompletely adapted house paid for by an insurance settlement. She hesitatedto describe herself as a disabled person and was fully enabled as a parent, despitebeing a single parent and living on benefits, which are characteristics morelikely to be associated with stressful parenting.

However, there were several cases where parents made a direct associationbetween reporting their child as a ‘young carer’ and the lack of formal supportavailable to them.

I see both my children as ‘young carers’ out of necessity.... They really domore housework than they should, so help with cleaning and cooking inparticular would be very helpful. It’s different if they want to help merather than having to help me.Mother (PI), single-parent family

A physically impaired mother and single parent, who received little formal orinformal support, saw both of her children as young carers “because I’m disabled,I have no choice”. It is striking that many comments about the necessity of

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child involvement in caring were made by single parents, supporting datapresented earlier on the higher levels of child involvement reported by singleparents.

However, many partners in dual-parent families referred to their involvementin caring as a by-product of the lack of formal support. There were many caseswhere a partner felt that their presence was ‘taken for granted’ by services, andthat services to support the disabled parent were not being made available.Some partners did see caring as part of the relationship, but for many this wasalso seen as the only option, either because of the lack of an alternative, and/orbecause of a sense of responsibility towards their partner. One father, who hadbecome a full-time carer for his wife, said:

I will do everything I can for her because she is my wife, but at the end ofthe day who else is there to do it?Father, dual-parent family (mother, PI, MHI)

Another father felt that ‘caring’ for his wife was his job:

I’ve never been one for asking for help. I married her so it is my responsibility– I don’t want to farm her out.Father, dual-parent family (mother, MHI)

What these testimonies teach us is that inadequate formal support hasimplications for all family members, and not simply children at risk of takingon caring responsibilities. Interestingly, our interviews with children alsohighlighted cases where they themselves saw formal services as important inlimiting what they would otherwise have to do. For example, one boy describedhow a ‘nurse’ (more likely a home-care worker) would come in every daywhen his mother was in hospital, and tidy up. We asked him about how it feltto have people coming in to help his mum, and he said:

It’s OK.... At least when she comes in to help my mum it means I don’thave to help her.... It means I can play out more and stuff.Son (11), dual-parent family (Mother, PI)

Clearly, then, there was awareness among parents and children that the receiptof formal support services played a part, or could potentially play a part, inlimiting the extent to which children (particularly in the case of single-parentfamilies) were drawn into ‘caring’ roles5. A small number of parents reportedthat formal support had been withdrawn, or withheld, on the grounds thatchildren in the family had reached an age at which they could be expected tohelp out. If this is the case, then, it is clear that in some circumstances theprovision of formal support to disabled parents acts to encourage – rather thanrestrict – child involvement in ‘caring’. One 12-year-old girl mentioned thatshe had known important emergency numbers from the age of seven, and took

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responsibility for calling the doctor on the rare occasions that her mother fellin the house. Until recently her mother had received home-care assistancewith ironing and vacuuming. Her father said that home care had beenwithdrawn at the same time as assistance in getting their daughter to schoolhad stopped (in the week of her 12th birthday). He felt that part of thejustification for this was the fact that his self-employed status often meant heworked in buildings close to the house. He deduced that the withdrawal ofhome care implied that both he and his daughter should take greaterresponsibility for domestic and caring work. For this family, the burden ofreduced formal support was placed on each of the family’s three members.When asked what extra support she might like, the daughter said:

It’s hard work and tiring. Home help stops when you are 12. That’s wrong,because you get more homework and tests, not less. Now I have to go tothe shop more. Mum has to do the ironing now, which makes her legworse, and dad is always having to stop work to go to the shops and things.Daughter (12), dual-parent family (mother, PI)

Other families said that formal support was offered in a way that either ignoredthe impact on family members, or that made assumptions about the willingnessof family members to meet any additional needs:

When my husband was too ill to work the GP just signed him off for twomonths. I went mad because I knew I couldn’t cope with him at home illall the time. I argued and argued and eventually he was offered three days aweek at a day centre and a CPN [Community Psychiatric Nurse] as well....He’s only ever seen two CPNs and only when I have demanded it.Mother, dual-parent family (father, MHI)

Another parent described how home care had ceased to be provided about fiveyears previously, when social services “stopped paying for it”. This mother toldus how the kitchen had become almost completely inaccessible as herimpairments had worsened. She was now completely reliant on her husbandand children for cooking, washing up, and so on. Indeed, when we asked herwhat adaptations were required for the house, she specifically linked the needfor kitchen alterations with the future departure of her children, now well intotheir teenage years. In this case, the indirect effect of increasing home-carecharges had been to increase the extent to which both the father (himself withhealth problems and physical impairments) and the children took responsibilityfor housework, with consequences for the son’s life beyond – and not onlywithin – the family:

A 17-year-old boy should not be folding clothes in a launderette all day –he should be out dating.Father, dual-parent family (mother, PI)

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Another way in which parents felt as though formal services did not reducereliance on family members was in the limits placed on the kind of work thathome-care workers could do. For instance, one single mother received homecare in the form of general domestic help and a cook two days each week. Shesaid that the problem with home care was that they could only do the lightertasks that she could generally manage herself through the day:

What I would really like is help with the more energetic things such ashoovering which I can’t manage myself and which I have to ask my son todo.Mother (PI), single-parent family

We also came across a small number of families in which disabled parents werereceiving substantial formal support in the shape of home care, personal assistancefunded from the Independent Living Fund or direct payments, and so on. Forthese families, the receipt of this support was instrumental in reducing theextent to which children were involved in caring and housework. However, italso became clear that even comprehensive care packages had not led entirelyto the withdrawal of children from caring roles. Again, it was often singleparents who were most affected by this issue. One single mother had recentlyemployed two personal assistants following years of having relied heavy on herson (now aged 17) for often quite intimate care. The arrival of morecomprehensive personal assistance had significantly reduced – but not eliminated– his caring role, and she still described him as a ‘young carer’. She said thatthey had both found it difficult to adjust their relationship to take into accountthe arrival of personal assistance. Her son elaborated:

Even though my mum has a lot of help now, and I don’t have to do as muchcaring, it is still difficult and a lot of pressure to live with someone with MEand depression.Son (17), single-parent family (mother, PI, MHI)

Another single mother had substantial formal and informal support during theweek, but relied on her 10-year-old son at other times:

Mostly I would say he is not a ‘young carer’, although occasionally, at nights,he just has to take over. Mostly, I’m just his mum, so if he stubs his toe hecomes over for a cuddle, but there are times he takes over mentally andphysically.Mother (PI), single-parent family

The ‘office hours’ kept by many forms of formal support were also mentionedby partners as the reason they still felt themselves to be carers. For someparents with physical impairments, professional staff carried out personal care,such as assistance with going to the toilet, for much of the week, but left it all

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to partners (and occasionally children) at other times. Similarly, partners ofparents with mental health impairments often felt that, even though their partnermight be receiving support through a GP or a CPN, they still took much ofthe responsibility for fighting for services and for recognition of their partner’ssupport needs. Additionally, parents with mental health impairments wereoften less likely to see domestic support as something to which they werelikely to be entitled, despite sometimes expressing the need for it to preventoverreliance on other family members6:

When I am in a depressed phase, I just don’t have the motivation to do thedomestic things that normally I love, like cooking.... They become a realburden. It would be nice to have something like meals-on-wheels but that’sa bit unrealistic.... Something like that wouldn’t be available to me.Mother (MHI), dual-parent family

It is clear that the availability of formal support to disabled parents is a centrallyimportant mechanism whereby children are protected from being overinvolvedin ‘caring’. For the most part, children’s caring involvement was at a low level(running errands, fetching drinks, and so on), although some parents expressedconcern about the responsibility it involved on the part of their child, ratherthan the sheer level of involvement. Again, those most concerned about thiswere single parents:

He does more than his mates – but only because he says that his friends’mums say things like “My word, you hoover!” But for me its not what hedoes exactly, but the responsibility he has for things. For instance, he willremember to lock the house up at night and put the milk away, and put thecat’s stuff away. He also takes responsibility for me on bad nights, he justtakes over and gets on with things.Mother (PI), single-parent family

Caring at nights and weekends, and in response to the more unpredictablethings that happen in family life, as in the above case, resists replacement byformal services. This means that, in the absence of direct payments whichwould give disabled parents greater flexibility and control in the receipt ofassistance, and in the context of the role that formal services can play incementing and extending the caring responsibilities of other family members,as we have seen in this chapter, it is impossible to consider the role of formalservices in preventing ‘young caring’ without considering also the role ofinformal support.

However, let us take a look at what parents said about the support offered by‘young carer’ projects. We mentioned earlier that seven target children in oursample were attending ‘young carer’ groups. And we found that parentsapproached the support on offer at ‘young carer’ projects in a variety of ways.One mother was enthusiastic about the ‘young carers’ group that her son was

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attending, and felt that there were no problems with her son’s involvement incaring:

I suppose he sees both sides – he sees the way we are, being disabled, and hisfriends’ parents are able-bodied. He goes out with the [‘young carer’ supportgroup] and they meet up at weekends with other teenagers in the samesituation. Sunday week they are all going to London for a day – beforeChristmas they had two shopping trips. He’s been going for one and a halfto two years. It’s made a big difference – yes, it has.Mother (PI), dual-parent family

One mother said that, given the lack of support available, her children had nochoice but to be ‘young carers’. And for her, the lack of available places at thelocal ‘young carer’ group was a major problem:

The welfare worker told me Barnardos have a club for ‘young carers’, butthey’ve closed the books – they are full. My children are ‘young carers’ outof necessity – they shouldn’t have to do it, it’s different if he wants to helpme rather than having to help me.Mother (PI), single-parent family

For one white mother with mental health impairments, it was important thather daughter – whose father was Asian – attended a ‘young carers’ group attachedto a local Asian mental health organisation. For some parents, the needs oftheir children could be met by a ‘young carers’ group, although they did notactually see their children as ‘young carers’.

A mother with complex mental health impairments was disappointed whenher children refused to go to the ‘young carers’ group, as they did not want tobe picked up by a special bus. She saw neither of her children as ‘young carers’,but said:

I’d have loved them to have gone – it would have given them a chance tospeak to other kids and to be a kid.Mother (MHI), single-parent family

Her eldest son said that he did not currently talk to any of his friends about hismother’s mental health impairments and that it was hard to talk to people as hethought that they would ‘take the mick’. This points to the fact that, whilechildren may not need support in relation to caring, they often require asupportive environment within which to talk to others about their experienceof parental disability and their parents’ experience of disability.

What we can see, then, is a complex and sophisticated relationship betweena willingness to define children as ‘young carers’, the perceived support needsarising out of being a ‘young carer’ and/or having disabled parents, and theavailability of ‘young carer’ support provision. Parents, it seems, approach the

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labelling of their children as ‘young carers’, and the question of their childrenreceiving support through ‘young carer’ provision, in a number of ways. Theseare informed not only by what children actually do, but also about their perceivedsupport needs in relation to a range of factors. These factors include ethnicity,the need for youth club provision irrespective of ‘carer’ status, the interchangeableuse of ‘caring about’ and ‘caring for’ to describe their relationship with theirchildren, and so on.

In addition, children themselves negotiate and contest the ‘young carer’ labeland the suitability of ‘young carer’ provision. These complexities perhaps helpto explain why, in the context of a generally very low level of involvement in‘caring’ and household work by children, such a high proportion of parentswere willing to label their children as ‘young carers’.

Informal support, family structure and ‘young caring’

It appears from our research that dual-parent families are in a better position toshare out assistance and household tasks in a way specifically designed to preventchild involvement. For example, one mother did not perceive her target childas a ‘young carer’, despite the fact that he helped looking after his youngersiblings. This mother referred to an ‘agreement’ with her husband:

It’s what we wanted – we talked about it. If they wanted to be involved,they could have, but really there’s been an agreement with my husband.Mother (PI, MHI), dual-parent family

Similarly, another mother said:

Between me and my husband we get things done.... We have a commitmentthat she will not become a ‘young carer’.Mother (MHI), dual-parent family

For many single parents, the desire to keep their children out of caring roles isless easily realised. This supports other evidence concerning the choices thatparents make about their children’s gender roles in assisting with householdwork (Morrow, 1996). This evidence suggests that, even for households wheregender divisions are strong, difficult circumstances will often lead to thedissolution of these divisions. Rather, the necessity for help from whoever isavailable takes precedence. In short, boys and girls are equally likely to belabelled ‘young carers’ by their parents.

Dual parenthood, however, provides no guarantee that children will beinsulated from taking on ‘caring’ roles. One father, whose wife was also disabled,said that his son had missed about 10 schooling days in the previous year, inorder to help out whenever his father’s leg problems flared up. Indeed, parentsin several other dual-parent families talked about the enhanced roles for childrenwhen the ‘other’ partner was ill, heavily involved in paid work, or during a

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‘bad’ spell when they themselves had impairments. This indicates that familiesin which both parents are disabled, and therefore face barriers to accessingsupport, may be particularly susceptible to relying on their children for assistance.

Even when parents felt that they currently had the resources to minimisechildren’s involvement, there was often a fear that this might not always be thecase:

I won’t let them get involved in caring for their mum. I’ve seen how itscrews them up when she has to go into hospital, how they worry. They’vegot their own lives and I don’t want to force it on them. However, I amworried about what will happen if something happens to me.Father, dual-parent family (mother, MHI)

The shape of any particular family also intersects with other key factors indetermining levels of support available to parents, and therefore the likelihoodthat children will be involved in assistance. One important factor is parentalemployment and its role in structuring the availability of support to disabledparents and their children. The low level of paid employment in our sample ofdisabled parents meant that most children in the sample had at least one parentwho was at home throughout the day, and several children gave this as thereason why they did fewer household tasks than their peers.

In dual-parent families, where the partner was in employment, there wereoften low levels of support available within the family, given the absence of thenon-disabled partner for work reasons. In one family, an eight-year-old girltold us that, when her father was at work, one of her roles was to telephone thedoctor or neighbours whenever her mother fell over. Another family facedserious dilemmas over the employment of the non-disabled partner. The father’swork took him away from home on weekdays; however, he was well paid, andthis enabled the family to have a quality of life that would not be possible werehe to give up work and become a full-time carer. However, his absence meantthat his disabled wife and his increasingly disabled son were left short of support,especially between the end of home-care support, the arrival of his son homefrom school and bedtime:

This last year has been desperately difficult, what with me working awayand being needed so much at home. It has meant that my son couldn’t goout at all in the week. He would simply come home and wait for thehome-care person to come and put him to bed.Father, dual-parent family (mother, PI)

This example, and others where one partner had well-paid – though oftenvery demanding – employment, illustrates the difficulty in assuming that singledisabled parents are inevitably more likely to depend on their children forassistance. In other words, dual-parent families may decide that the partner’searnings are so important to them that they live with a level of informal help

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that is similar to that experienced by single parents. It also shows that beingconcerned about who is available to care for a disabled family member ormembers is, in fact, only one of many other, broader concerns. (In the exampleabove, these concerns included the lack of stimulation and variety in the son’slife and issues of safety when no assistance was available.)

Children’s caring involvement is not simply related to whether the familyhad one or two parents. Several parents, for instance, expressed views on theirchildren’s involvement that were clearly influenced by conceptions of genderand age. One partner, who was also disabled, talked about the significance ofage when deciding appropriate levels of help from his 10-year-old daughter:

It’s important that my daughter doesn’t do too much for her mother, but asshe gets a bit older then I think she will do a lot more.Father, dual-parent family (mother PI, MHI)

However, age was not the only factor: gender, too, informed this father’s attitude,since he was keen to compare her involvement in household tasks with that ofthe daughters of other members of his extended family. Although he had saidthat his daughter did more housework than the other children of her family, healso said:

She is really a little bit lazy. When we go as a family to my cousins, theirdaughters are much more helpful, taking your cup and washing it up as soonas you have finished your tea.Father, dual-parent family (mother PI, MHI)

This means that the housework and caring expected of children in familieswith disabled parents is often as much a matter of gender and age expectationsas it is of disability and the need for care. Expectations based on age andgender, however, are not straightforward. Some parents, for example, stressedhow important it was that children were asked to do less around the house astheir GCSEs approached. One partner talked about a period four or five yearspreviously when his wife had been very depressed. He said that the family waslucky in a way, since their eldest children were old enough (they were thenaged about 14 and 15) to be fairly independent in terms of activities, and didnot need much supervision or input. Their youngest child, on the other hand,was too young to be involved in social activities outside the house (she wasthen aged eight), requiring the partner’s time and commitment. In other words,the age gap between his children made it easier for him to care for his wife ona full-time basis.

In addition, our respondents tended to describe the entire agenda of domesticwork and assistance in very different terms for children under the age of 10,roughly, compared to adolescents. This is an important point in childhood: itis the age, for instance, when children generally move from primary to secondaryschool, with important implications for parental access, mobility, and so on.

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(These issues are discussed later in this book.) When parents were asked aboutthe involvement of younger children in housework, they frequently talkedabout the difficulties in ‘fending off ’ requests from children to assist, with cookingfor instance. For several parents, the overenthusiasm of younger childrenconcerning involvement in domestic tasks was an important issue to deal with.If not managed properly, this issue was potentially detrimental to their health.One mother with mental health impairments described the impact on herhealth of the constant demands of her five-year-old to help in the kitchen:

I discourage her from being involved. Well, she is a bit young but also it isvery tiring and I have to try and conserve energy for the sake of my mentalhealth.Mother (MHI), dual-parent family

Another partner talked of how he tried to keep his four young children – allbelow the age of 10 – out of the kitchen. He was concerned about the dangerthey might put themselves in, as well as the fact that he simply could not affordto have them getting in his way.

With older children, the most typical response regarding housework wasone that many parents will recognise: the difficulty of getting teenagers to tidyup, or do anything to keep the house clean and functioning! The apparent factthat children’s involvement in housework is conceptualised differently for olderand younger children is important in the ‘young caring’ debate. It challengesthe dominant assumption that children’s involvement in housework is primarilya product of parental impairment. Instead, the management of children’sinvolvement, or overinvolvement, is about the age and gender expectationsthat parents have of their children, and the desire to be involved, or not involved,on the part of children themselves.

Children as social actors

It is clear that children are actively engaged in constructing and/or resistingcaring roles and household responsibilities. For instance, children often told usabout their contribution to household work and caring in terms of the otherthings important to them in their life. One boy had a job in a local restaurantand was also studying for his GCSEs:

I do what I can, but often I’m not here to help. I’ve got my job, my examsand my girlfriend, so really I don’t have time to help.Son (15), single-parent family (mother, PI)

Another boy, whose mother, sister and father were all either disabled or hadcomplex health problems, was not involved in significant caring. His father,however, described his role as ‘keeping an eye on’ his sister and mother when

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he (the father) had to go shopping. When interviewed, the boy situated hisinvolvement in terms of schoolwork and his educational priorities:

Well, I suppose I do play out less than my school friends. Sometimes, it’s’cos my dad needs to go out, but the other kids at school don’t seem to careabout their schoolwork or their exams, but I do.Son (14), dual-parent family (mother, PI)

In several interviews, children felt capable of expressing resentment about theextent of assistance they were required to give to their parents. Sometimes, aswe have seen, this was expressed as a desire for greater formal help for theirparents in order that they might be afforded more free time. However, childrenalso expressed resentment towards what they saw as unreasonable demandsmade by parents themselves. One boy eloquently described his pride in beingthe eldest child and the only one able to open the stiff hall door. However, healso felt very put upon:

Mum makes me do things around the house that I’m too small for. SometimesI have to help mum put her socks and shoes on and sometimes she has nopants on, and I don’t like it. She’s angry with the world, so has a grudgeagainst me.... She makes me do so much, I’m only a kid.Son (10), dual-parent family (mother PI)

One older child said that, while he was growing up, he felt that his father hadused his mother’s impairments to try to get him to do much more than hisfriends and other children of his age were expected to do. Now that he hadleft school and was in work, he said that he was better able to ‘stick to my guns’and so help less when he was called upon. The fact that he also had primary-school-age siblings who were now more able to help out his mother alsoenabled him to say ‘no’ to his father more often. In contrast, when somechildren in our sample were asked whether they needed any support, severalsaid they wanted to be taught how to do even more things to help their parent(s).One nine-year-old said that she wanted cookery lessons so that she couldcook meals for her mother. Again, this typifies the different approach to ‘helping’expressed by or about younger children.

Another example illustrates the fact that children approach involvement incaring and domestic work with their own sense of what is right and wrong,and their own reasons for taking on – or resisting – ‘caring’ activities. One 15-year-old boy took significant responsibility for helping his father, who in turnwas the main carer for the child’s mother. He was asked whether he thoughthis level of involvement was fair:

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Yes, I think so. Things just need doing so I help. I want to help because ifI take some of the work off my dad, then my mum and dad will be morerelaxed and happy.Son (15), dual-parent family (mother, PI)

Here, the child clearly felt he had things to gain from being a ‘carer’ in terms ofcontributing to family harmony, even if this meant restrictions on his free timeand social opportunities. This indicates that children are actively engaged indecisions, trade-offs and dilemmas of their own when negotiating a caring rolefor themselves. We discuss the age difference here and earlier when reflectingon how things are different for children aged 10 and under. That is not to saythat all teenagers have the same degree of freedom in negotiating caring roles,but that children in general will be, in many cases, active in carving out orresisting a role for themselves and that this makes ‘young caring’ morecomplicated than existing theory caters for.

Finally, as we have also seen, children can actively demand a greater level ofinvolvement in housework as a ‘play’ activity. The following two examples –each involving 10-year-old boys – illustrate the difficulty in striking a balancebetween wanting children to do more to help, and dealing with the stress thattheir involvement causes, especially, as in the second example, when this balanceneeds to take account of employment obligations.

Sometimes I need to rely on him, and sometimes he relishes this and wantsto help, sometimes too much …. For example, when I’m tired it’s too mucheffort to battle over the things he wants to do, like using the kettle, which Idon’t like him doing. At other times, he gets fed up with helping and I can’tget him to do anything.Mother (PI), single-parent family

I think that my son does do more than his friends – sometimes voluntarily,sometimes not – but you have to balance it with wanting them to have theirchildhood. The thing is, with my working hours it’s important that when Iget back I can get on with what needs doing. Sometimes he wants to helpso much he tries to do things he isn’t capable of, so sometimes you’re facedwith trying to rein him back a little bit.Father, dual-parent family (mother, PI)

Conclusions

Despite a generally low level of involvement in ‘caring’ and domestic work,our quantitative data show that a third of parents labelled their target child asa ‘young carer’. Another third said the target child was involved in ‘caringactivities’. No significant differences in the application of the label were foundbetween boys and girls, or between younger and older children. Single parents

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and dual parents each talked about children being involved in caring activities;however, single parents were more likely to describe the target child as a ‘youngcarer’ in the fuller sense of the word. This pattern is repeated in what singleparents say their children do, and in what the children of single parents perceivedthemselves as doing. It is further supported by evidence that child involvementin caring work in dual-parent families is likely to be alongside other sources ofhelp, as opposed to in single-parent families where children are more likely tohave sole involvement in providing assistance.

What we have been stressing throughout this chapter is the importance ofplacing ‘young caring’ in the context of the meaning attached to children’sinvolvement in providing assistance. In particular, the presence or absence offormal alternatives is key in understanding children’s involvement. However,this can only be understood in combination with the (un)availability of informalsupport and the role of family shape, age and gender in structuring expectationsof children. Each child’s age is particularly important with regard to caringinvolvement. That is, qualitative analysis suggests that the whole issue of youngerchildren assisting with domestic work is played out within an entirely differentframework based on play and enthusiasm (on the part of the children), and theneed to manage and occasionally fend off this enthusiasm (on the part of theirparents). We have highlighted the dilemmas faced – and strategies adopted –by disabled parents in order to prevent their children adopting ‘caring’ roles, aswell as the potentially negative impact this has on the parents in terms ofenergy levels, the management of impairments, and so on. Similarly, attentionwas drawn to the role that children play as active negotiators and resistors ofcaring roles.

As far as we can see, then, the existing theoretical approaches to defining‘young caring’, as well as policy and practice responses to it, are underdeveloped.Our argument is that, politically and practically, the response to ‘young caring’should take the form of interventions aiming to underpin the parenting role ofdisabled adults and to provide them with the option of not having to askchildren for assistance. However, fulfilling this depends upon a more sophisticatedunderstanding of the context in which ‘young caring’ takes place. In all, thisincludes an awareness of:

• the meaning attributed to children’s involvement within family relationships;• the role of factors (such as family shape) in structuring both the quantity

and nature of any ‘caring’ carried out by children;• the different framework used to explain and respond to the involvement of

younger as opposed to older children in caring work;• the active role taken by children in negotiating and resisting ‘caring’ roles for

themselves.

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Notes

1 Dearden and Becker (1998) have examined the characteristics of this group in somedetail.

2 However, as we have mentioned earlier, this may reflect a bias in our sample. That is,parents with mental health impairments in our sample may have been relatively wellat the time of our interviews, compared with earlier periods in their lives, as well ascompared with the broader population of parents with mental health impairments asa whole.

3 Since different wording was used in the parents’ and children’s questionnaires, thereis a danger of overestimating these results.

4 Of course, there may not have been one in some areas, although most parents didlive within an area covered by a ‘young carer’ project.

5 We are prevented from testing statistically whether or not those parents in receipt ofspecific services were less likely to consider their children as ‘young carers’ as a resultof the small numbers that took part in our survey. Furthermore, absence of formalinput, as we mentioned earlier in the text, may indicate a fully accessible homeenvironment rather than an enhanced need for informal care.

6 In Chapter Three we highlighted the fact that this perceived ineligibility for formalsupport was compounded for some parents, since they found it difficult to deal withpeople coming into the house to provide support.

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The life course

FIVE

The life course: dimensions of changein parenting and disability

Introduction

This chapter examines the importance of change in the experiences of disabledparents and their families. This involves focusing on hopes and experiences ofbecoming and being parents, within a life-course perspective. By this we meanexploring choices and expectations around parenting, from childhood throughadolescence and into adulthood. Parenting is often perceived as a ‘normal’feature of independent adult life. And yet attitudes towards disabled people donot always reflect this. We argue, therefore, that a life-course perspective is vitalto the debate of parenting and disability, and the policy shaped to deal with it1.

The relative invisibility of disabled parents, particularly when compared tothe exposure of children who have been defined as ‘young carers’, is related tothe concentration of social policy on the beginning and the end of the lifecourse. This is also reflected in approaches to the support of family life; that is,research on family transitions is largely concerned with the transition toparenthood (and the early parenting years), and transitions into adulthood.The concept of the life course is more flexible than the previous conception ofthe lifecycle, which presented a normative description of key stages throughwhich each individual passed. However, the experiences of disabled peoplecan be defined and restricted by a policy framework that continues toindividualise the life course.

For those disabled people who do seek to operate as independent ‘adults’two issues seem central – work and parenting. Idealised constructions ofadulthood emphasise parenting and partnering as a signifier of adult status.(Priestley, 2000, p 430)

Our findings are intended to comment on the significance of change, both interms of the experiences of disabled parents and their families, and in terms ofthe ability of formal and informal supports to respond. We have been concernedto present our examination of change in the broadest possible terms. Therefore,we have looked not only at the implications for parents of the changing needsof children as they grow up, but also at the changes that take place in familycomposition, and in the nature of disability impairments. Our analysis, then,highlights the importance of understanding that the experience of disability is

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closely linked to the changing experience of parenting, and the changingdemands of the parenting role. This broader context of change also requiresinclusive definitions of parenting to be as important as inclusive definitions ofdisability.

Impairment, disability and the life course

In Stages One and Two, we included parents whose impairments predatedparenthood as well as those who were already parents at their onset. For half ofthe Stage One sample, the impact (though not necessarily the initial onset) oftheir impairments began after having become a parent. Therefore, the parentsin our sample, irrespective of impairment group, reported various ‘starting points’in their life as a disabled person. This allowed us to examine the experiences ofthose who were disabled people before becoming parents, and those who hadalready had children beforehand.

We can state in broad terms that, in most families where disability longpredated having children, we found parents were less likely to see theirimpairment as central to their experience of parenting. However, we areunwilling to make overgeneralisations on the basis of such a classification ofdifferent experiences. Not only did some respondents find that a pre-existingimpairment was significantly altered having become a parent (for women, thiswas often as a result of pregnancy), families also experienced other significantchanges that altered family life (such as changes in the employment status ofparents).

Clearly, it can be difficult for some people to pinpoint a particular period intheir lives when they felt that they had become a disabled person (indeed ifthey felt that way at all). The point of diagnosis often bore no relation to theparent’s experience of onset, especially for those parents who felt that theirmental health and/or physical impairments should have been identified andrecognised at a much earlier stage by medical professionals.

Reference to the diagnosis of a condition or pinpointing the ‘onset’ verymuch represents a medical approach to what may have been a gradual process.Furthermore, this process may have been a reflection of increasingly inaccessibleenvironments (in the broadest sense) rather than deteriorating impairments.Although receipt of a medical diagnosis can provide a key to support (such asdisability benefit), the diagnoses themselves were not always considered toencapsulate either the personal experience or the history of impairment. Someparents reeled off numerous diagnoses that they had received over the years,variously accepting and rejecting the labels applied to them. This was mostoften the case in relation to mental health impairments.

It became quite natural, then, for some parents to link adulthood experienceof impairment to childhood experiences. For example, we interviewed a numberof women who discussed their mental health impairments and their experienceof parenting specifically alongside experiences of abuse or difficult familyrelationships in childhood. We also spoke to parents with physical impairments

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The life course

who stressed that while no ‘diagnosis’ occurred prior to their becoming aparent, they felt that the deterioration of their physical functioning had begunduring childhood. For example, one man described how he began to findwalking difficult as a young teenager, yet was in his 30s before he was eventuallydiagnosed with multiple sclerosis (MS). Some of those with gradually developingimpairments felt that not much could have been done to speed up a diagnosis.Others spoke, however, of how there had been reluctance on the part ofprofessionals to take their symptoms seriously. In short, then, our researchsample included a group of people who felt that they had become parents afterthe onset of impairment but before they received a diagnosis, medicalintervention and/or support.

Let us now turn our attention to some specific difficulties faced by thoseparents who, having had their impairment identified, had felt unsupported –and effectively disabled – in their desire to become parents in the first place.

Disabled people’s experience of the transition to parenthood2

Some of those who had experience of disability before becoming a parentspoke about their own and other people’s (including professionals’) attitudes.Consequently, it was possible to gain detailed insights into key barriers facedby some disabled people as potential parents, such as professionals who hadbeen either supportive or unsupportive when they expressed their wish tohave children. (Of course, our sample’s parents had successfully gone on tobecome parents, despite the barriers they had faced3.)

One single parent with four children provided us with a stark reminder ofthe lack of encouragement in employment and parenting she had experiencedas a result of her segregated education as a disabled child. Not only had shereceived little or no support in terms of taking qualifications, low expectationswere also expressed about her potential for having a partner and for havingchildren.

A teacher told me I would never have kids – I was 14. She said “You’llnever have children, no one will have you”.Mother, (PI), single-parent family

When we interviewed this parent, we found that she had a stable and adequateincome (largely through compensation payments), a well-adapted home, herown transport and a strong sense of her own ability as a mother. Indeed, herfeeling of ‘if they could see me now’ was expressed by other parents who feltthat others had not expected them to make a success of parenting. Expressingone’s enjoyment of parenting also proves to oneself, as well as to others, thatyou can have and bring up children. For these parents, the problems – ratherthan the possibilities – associated with parenting had been stressed.

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I suppose it’s nice to know I could carry a child…. I’ve proved to people,I’ve done it, as I didn’t know I’d be able to have children.Mother (PI), dual-parent family

Respondents indicated how professionals in their adult life had sometimesreinforced this disapproval. Some mothers described how they had beendissuaded on health grounds rather than any (overt) prejudice. In these situations,it was often stressed how access to supportive healthcare workers had beenvery important in deciding to get pregnant, and in managing any difficultiesexperienced during pregnancy and labour. One woman, now a single parent,had been warned by doctors of the potential physical stress of pregnancy. Shestated specifically that, since her husband was a health professional, she “knewwhat was available and what my chances were”. Another mother with physicalimpairments said that her GP had expressed the view that she could not lookafter herself, let alone a child. The difficult relationship that developed from hisattitude meant that her support in pregnancy came instead from her hospitalconsultant and a gynaecologist.

Social care and other professionals were also reported as having occasionallyexpressed disapproving attitudes. One mother said that a social worker hadtold her that “disabled people shouldn’t have children if they cannot look afterthem”. Another single mother, who had experienced long-term mental healthimpairments, said “I’ve had social workers tell me not to have them [children]”.This message – that to be a parent with ‘mental illness’ or ‘disability’ isirresponsible – is bound up with beliefs that disabled parents are unable toprovide security for children, as well as concerns about the child’s own ‘mentalhealth’, be that the result of a genetic, social or behavioural risk. Beresford andWilson argue that this dissuasion from parenthood continues to be experiencedby mental health service users. The current message is that they:

have a moral responsibility not to have children in the interests of preventingfurther unnecessary suffering. (Beresford and Wilson, 2002, p 547)

This was the message given to many of the parents in our sample. Even amongthose who had not received such explicit ‘advice’, often the feeling was that itwas broadly considered inappropriate for disabled people, who themselvesrequired support, to have children. This attitude could be read into experiencesof conflict with services. For example, one mother said that she and otherdisabled people could feel guilt about having disabled children in the firstplace. Although she did not overtly link this to her difficult relationship withsocial services, these feelings of guilt are likely, at least in part, to reflect the wayin which she had felt defined by services as a problem to her family, rather thanmore positively as a parent.

It is clear, then, that negative attitudes towards disabled women in particularled to anxiety in childhood and early adulthood about their future prospectsfor relationships and children4.

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The immediate advantage of an increased visibility of disabled mothers andfathers is that it challenges the attitudes of non-disabled adults. It may alsobroaden the parental aspirations for (and of) younger disabled people in relationto the transition to adulthood. The experiences of women can be particularlypertinent, since some may require specific medical care during pregnancy toprotect themselves and/or the child.

Pregnancy and postnatal care

For some women in our sample, pregnancy had implications for their physicaland/or emotional health. In many cases, a successful pregnancy was emotionallysatisfying for those who had not previously been encouraged to become aparent. Other positive personal experiences reported were relief from physicalpain, to a more positive attitude among disabled parents than might beexperienced by non-disabled parents to the potential of impairment in a child.In addition, some women received increased support from formal services withregular access to a general practitioner, consultant or nurse, which was oftenimmensely reassuring.

For some women, pregnancy posed a threat to their own wellbeing, such asthose who had to change, or temporarily stop taking, medication that couldpotentially harm the foetus. For them, medical advice and other support hadbeen very important and reassuring. However, these women often reportedthat professionals were unsympathetic to their specific needs during this time.Most often, it was parents with mental health impairments who spoke aboutthese issues, although they are clearly relevant to parents with other healthconcerns (such as epilepsy). For example, one mother who had manic depressionsaid that she did not take her medication during pregnancy, because of the riskto her child. She did not return to medication after her son was born, and hadno outpatient care until she was admitted to hospital with her baby a fewmonths later. She believed that her consultant was “obviously one of thosepeople that didn’t think I should have children”. Indeed, during her pregnancyher husband, who also had a mental health diagnosis, had spent some time inhospital on a psychiatric ward. During a visit to her husband, and thereforeoutside of a formal consultation, a professional thought it appropriate to commentnegatively on her pregnancy. What, then, of the importance attached to theindividual consultation and confidentiality, at least within psychiatrists’ publicaccounts of their relationships with patients?

I got pregnant and he [husband] got ill [laughs] but I was fine throughout….Even visiting you in the ward when the consultant said to me, “I believe yousuffer with manic depression?”. I said, “Yes”. He said, “You do realise youwill be ill soon?”. Because, there was me with my bump. I said, “Thank youvery much”. [Laughs]. You know, that’s really helpful.Mother (MHI), dual-parent family (Family E, Interview One)

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This mother’s experience illustrates how, in addition to the day-to-day difficultiesinherent in parenting (such as a lack of appropriate support), parents could befaced with such negative and demeaning responses from professionals to newsof a pregnancy. Needless to say, such pressures and attitudes could lead topregnancy itself being a traumatic experience. In a small number of families,we heard how termination of the pregnancy had been chosen or considered,sometimes at the suggestion of a medical practitioner. We did not specificallyask about this, but parents would describe their own decision processes. Forexample, one couple told us how they had only decided against a terminationbecause the trauma of an abortion was more likely to be detrimental to themother’s mental health than having another child to look after. On the otherhand, however, continuing with unplanned pregnancies could also be traumatic.One woman told us that she had previously had a termination aftercontraception had failed, at a time when she was already planning a sterilisation.The subsequent sterilisation failed, owing to medical negligence, and she becamepregnant again. She then had a second termination as she felt she could notcontinue with that pregnancy having previously terminated one. In additionto the stress felt given these experiences this mother suffered physical ill healthresulting from poor medical care, and she felt the combined stresses were linkedto her later development of a neurological impairment.

Women who had experienced problematic, or previously unsuccessful,pregnancies reported how this could make the transition to parenthood andongoing parenting more difficult. For some, increased levels of distress wereexperienced, and pregnancy or the postnatal period marked the first time inwhich a diagnosis (sometimes of postnatal depression) and/or psychiatric carehad been received. For example, one woman told us that she first startedtaking antidepressants after miscarrying. Although she had experienced somemental health impairments before this, they were not recognised by a professionaluntil after the miscarriage.

As we have already seen, mothers with physical impairments were sometimesadvised not to have children because of the physical demands of (and risks to)pregnancy and childbirth. Before successfully giving birth to her daughter,one woman in our sample had experienced miscarriages. These had the effectof planting seeds of doubt about whether or not she would be able to carry achild for long enough for it to survive. Consequently, when she did have herbaby, she felt that her previous lack of confidence in the pregnancy preventedher from bonding well with the child.

We had a number of mothers in our Stage One sample who reported thatMS, depression or back problems developed or worsened just before or afterthe birth of their child. For parents with a physical impairment, the emotionalconsequences of an increased severity in impairment following pregnancy wereoften stressed more so than the impairment itself. We look at this further laterin this chapter when considering the experience of parenting young children.

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Changes in family composition

In Chapter Six, we focus specifically on parents’ experiences of their ongoingrelationships with partners and children. Here, we want to deal with theimportant way in which the experience of parenting can change over timethrough alterations in family shape. We do this by looking specifically at parents’reports of their decisions to have (or not have) more children, the ending ofrelationships with partners, and the experience of losing a child.

Decisions to have further children

In Stage One, we asked the disabled parent to say whether or not they hadconsidered having more children in the future (Table 5.1). The vast majorityof parents felt that their families were complete, with only five parents seeingfuture children as certain or likely.

While one child was a positive choice for some parents, others spoke of howthey had hoped for further children. Although this is an experience shared byother families, parents did sometimes talk about the consequences of this in thecontext of parental impairments:

Some days I thought it would be nice for my daughter. For instance, if I wasill, she would have a playmate.Mother (PI), dual-parent family

Several parents gave a similar reason for wanting another child. Therefore,decisions to add to the family were made despite any concerns about impairmentsand health problems. One father, for example, described how his wife’s MSworsened considerably after the birth of their third child; yet they were

Table 5.1: “Do you think you will have more children in the future?”

Number

Currently expecting 2

Yes 1

Probably yes 2

Probably not 5

No 53

Don’t know 2

Not answered 2

Total 67

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determined that this daughter should have another sibling due to the large agegap between her and her elder sisters.

Earlier in this chapter, we saw that professionals could have an importantpart to play in enabling disabled people to become parents in the first place.Often decisions to have further children were made in negotiation with healthprofessionals – 20 parents had been advised at some time by professionals notto have any – or any more – children. None of these parents felt that theywould be likely to have any more children, with 17 certain that they wouldnot. However, professional responses to potential or actual pregnancies rangedfrom specific advice in the context of a consultation, to casual remarks.Sometimes it was simply the manner in which the professional responded to aparent that conveyed their (sometimes influential) disapproval. One single motherdiagnosed with manic depression, who had two children living with her aswell as an older child living with her ex-husband, said that she would not haveany more children. In fact, her psychologist made a ‘funny face’ at her whenshe said she wanted another baby. Similarly, people received input from othersin inappropriate circumstances. For example, a paediatrician whom a mothervisited with her son made a comment aside from her son’s health problems:

He wanted to give me counselling so I wouldn’t have more kids – he keptsaying, “Are you pregnant?”.Mother (PI), dual-parent family

Parents whose family life was already operating under considerable pressureoften internalised the feeling that it was something wrong with their parentingthat had lead to difficulties. Earlier in this chapter we referred to a mother whosaid that social workers had told her not to have children. She was a singlemother, whose sons’ had emotional and behavioural difficulties, and she feltthat both she and her sons had been unsupported over a number of years.While she did not talk specifically about her own childhood, she did volunteerinformation about her difficult years before becoming a mother, includinghaving had a custodial sentence as a young woman. She thought that she wouldprobably not have another child, despite having also said that she would quitelike another one. While recognising that her sons had difficulties with whichthey required more support than they received, she also expressed her ownfeelings of failure. She stated that if she were to have another child:

I might get it right this time.Mother (MHI), single-parent family

A father’s impairment could also influence a couple’s decision about whetheror not to consider having another child. Not one of the disabled fathers in theStage One sample thought that they would have any more children. It may beless likely for professionals to offer ‘advice’ to families in the case of a disabledfather, and perhaps this is in part due to assumptions concerning men’s role in

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parenting. A father with MS told us that no professional had ever talked tohim about whether or not he wanted more children, but that it had been animportant issue to himself and his wife:

MS is very important. We do talk about it – my wife would like to [haveanother child]. I know it would be a struggle and now I’m not working.Father (PI), dual-parent family

It would be wrong to suggest that many of the parents in our sample wereunhappy about their decision to have no more children, or that their impairmentwas always a central factor in this. Rather, just as some parents had mainstreamconsiderations at the fore when deciding to go ahead with more children(such as wanting a sibling for a previous child), many felt that their familieswere complete, and/or had concerns about money and employment issues –sometimes linked to disability – which led them to decide against furtherpregnancies.

Others were pragmatic about their decision not to have more children onhealth grounds. However, mental distress (linked to either a mental ill healthdiagnosis or painful experiences during pregnancy) also featured. Two suchparents were among a small group who stated that soon after their last pregnancythey or their partner had been sterilised:

I sent him [partner] to the doctors after our son was born as I didn’t wantmore. If I’d had any more, I’d be gone – I wouldn’t be living.Mother (MHI), dual-parent family

I said I didn’t want no more. They [professionals] said don’t get sterilised untilSally is one – how horrible that pregnancy was. When Sally was one I wassterilised. I don’t think my spine would take another pregnancy anyway.Mother (PI, MHI), dual-parent family

The responses of the parents in our sample therefore suggest that very few hadin-depth advice from professionals concerning their decisions to have morechildren. Anyhow, many felt that this was a decision they could make on theirown. Fathers particularly seemed to be least likely to receive information frommedical professionals (for instance, on potential support available). While somemothers felt they had received good care and information, others felt that therewas often limited information and directive – rather than supportive – input.Some felt that professionals were trying to police decisions that they felt capableof making on their own in the light of information provided. This highlightsa need for parents to have access to good-quality information and advice, andin appropriate settings. Our data also show that decisions about whether ornot to have children are closely interwoven with concerns about disability(public and professional attitudes, the anticipated extra difficulties, and so on)and impairments (for example, the effect of pregnancy on existing impairments,

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and the effect of taking or not taking medication during and after pregnancy,among other things).

Relationships: endings and their consequences

Single parenthood, rather than impairment itself, was often put forward bysome parents in our sample as the main source of strain in parenting. Significantly,the earlier chapters of this book indicated the additional barriers faced bysingle parents in accessing support, as well as the additional socioeconomicdisadvantage faced by disabled parents, and the likelihood that the children ofsingle parents would take greater responsibility for domestic and ‘caring’ work.

As part of our research, we did not pursue details about separations, or thedeath of a child’s other parent. However, parents were often open about theirpast relationships, and why they had ended, and the extent to which childrenmaintained contact with a non-resident parent. As one would expect, whereimpairment had been present before a relationship began and had remainedrelatively stable, the impairment was not usually seen to be a factor in a separation.A small number of parents, however, and particularly those with mental healthimpairments, identified destructive or abusive relationships that had exacerbatedand/or focused upon their distress. One woman told us that, although her lastpartner found her manic depression ‘hard’ to cope with, she differentiated thisrelationship (from which she continued to derive support) from her previousmarriage:

My ex-husband used to say “You’re a psycho” – he was verbally abusive.Mother, (MHI), single-parent family

While a high level of input from the child’s other parent could be a greatsupport, for others it impacted on their own relationship with their child, andparticularly the extent to which they felt a child should provide them withsupport. The only single father in our sample, who was also interviewed atStage Two, continued to care for his son in close negotiation with his son’smother. So much so, in fact, that the mother called in during the first interviewand the father felt it improper to consent to his son’s taking part in the researchwithout asking her permission. Their separation had occurred at the sametime that his health difficulties began and he was unsure about whether or notthese were related. He was concerned not only about protecting his son frominvolvement in care tasks, but also about criticisms from his ex-partner:

I mean there are occasions, you see, when I fall down at home…. I can’t pickmyself up. I know that he wants to help me then, but I can’t ask him to dothat…. He’s not quite old [enough?].… And apart from that, his motherwould give me a hard time if she thought I was using him as a carer.Father (PI), single-parent family (Family J, Interview Two)

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Parents also raised concerns about how much to inform an ex-partner abouttheir impairments. Another father in our sample, who had shared caring taskswith his daughter’s mother (and who had re-partnered), felt unable to explainhis impairment to his daughter. He was held back by the worry that his ex-partner would rush the child to the doctors to ‘have her checked out’5.

The extent to which non-resident parents continued to have contact bothwith the disabled parent and their children was clearly an important factor formost single parents and ‘reconstituted’ families. Single parents identified perceivedthreats to their children’s wellbeing, which reduced the capacity of the child’sother parent to sustain their involvement in parenting. These factors rangedfrom the other parent living abroad, to their coping abilities, and to alcoholism.For such single-parent families, accessing the support of a child’s other parentwas not always an option. Families who had experienced domestic violencefaced particular difficulties. Where an ex-partner was perceived to be a continued(physical or emotional) threat, and where the parent felt undersupported, theconsequences were often isolation and fear. One mother told us how she andher children had to change their family name and sever all ties that could linkthem to her children’s father. After some time at a women’s refuge, they had aprotracted period when they were moved to various ‘safe houses’ before finallysettling in a village. Here, however, the family (and the mother in particular)felt extremely isolated. Another single mother, the victim of her ex-partner’sviolence from when their child was just six months old, expressed fear. Shehad been unable to isolate herself from him completely, and her ex-partner hadat times tried to abduct the child, despite an out-of-court access agreement. Atthe time of our interview, the father had recently been seen waiting close toher son’s school, causing her to be concerned that he might again try to takethe child.

These experiences can be contrasted with a small number of families wherean ex-partner maintained very strong links with the day-to-day lives of thefamily. For example, a mother talked about the important part played by herson’s father, who not only maintained regular contact with their child, but wasalso heavily involved in supporting her domestically (with household choresthat she found very difficult to carry out during periods of mental distress). Aswith other single parents, therefore, the long-term impact of a separation onparenting responsibilities was very varied.

Loss of a child

Within our interviews, there were three ways in which parents had experiencedloss in a parenting relationship:

• the death of their child;• their child(ren) being taken into local authority care;• their child(ren) moving to live with another parent.

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One family highlighted how the loss of a child prior to the mother’s disabilityhad in fact strengthened family coping resources. A Stage Two family (FamilyC) had lost their youngest son when he was five years old, before the onset ofhis mother’s MS. The parents felt that this loss had significantly affected howthey and their two other children had subsequently coped with both the mother’sdiagnosis, and the progression of the condition. The father viewed his tworemaining sons as having always been there to provide support, and felt that thefamily’s earlier loss had equipped them to deal with their upset at their mother’sdiagnosis.

Unfortunately, we found one clear example of how formal services exacerbatedthe difficulties of a family who experienced the death of their disabled child.This was one of our families interviewed at Stage One and Stage Two (FamilyH), who, between interviews, had been bereaved when their teenage daughterdied suddenly. Preceding this, there had been a long battle with local servicesfor support for both their daughter and the mother, in which they had eventuallysucceeded in obtaining home adaptations and direct payments. The griefexperienced by this family was exacerbated by a social work report prior totheir daughter’s death that had expressed the view that the mother was not anappropriate model for the daughter to ‘emulate’ as a disabled person, since thisdid not aid her development. This was in contrast to the feelings of the mother,who felt that their different impairments had actually provided them with aspecial relationship of camaraderie. Since the child’s death, the swift approachof the benefit agency for information, and subsequently slow processing of thefamily’s benefits, at a time when they were looking to meet funeral costs, hadcreated further hurt. Their grief was further impinged on by a plan by localservices to have the family convert the daughter’s bedroom into a bathroom intheir plans for adapting the family home. The primary sources of support forthe family had been their local church and their daughter’s school. Both groupshad expressed sadness at the girl’s death, and showed concern for the family’sloss. These basic human responses were sadly lacking in the actions of theformal agencies.

We also heard of social services expressing disapproval towards a young man’sdecision to return to live with his mother, after having been in local authoritycare. For a long time, his mother had been living on her own as her childrenwere living in various local authority placements. Her husband had died aftera long illness when their children were very young. She described each of hersons as having had ‘behavioural special needs’, and she had often been unhappyabout the inadequate support they had received. She saw the estate where shelived as a threatening place for her children to live, and felt she could do littleto protect them. She and two of her children had experienced violence fromneighbours – she saw this as the cause of her children being looked after by thelocal authority. At the time of our interview, her eldest son had returned to livewith her, after living with his girlfriend’s family for a short time, and he hadregular contact with his grandparents (although his younger siblings did not).His mother told us that his plan to return home was not treated positively by a

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social services team leader. In fact, he had been warned that, if he did live withhis mother, he would feel guilty “because your mum’s disabled”.

Both of these cases highlight long-term difficulties that can be faced byparents who struggle to receive supports that are relevant to their family’s needsas a whole. Of particular concern is the way in which disabled parents in bothfamilies appear to have been considered as ‘problems’ in themselves.

Three disabled parents did inform us that a child of theirs had been adoptedinto another family. One woman, who spoke briefly about a baby she hadgiven up for adoption, said that, in retrospect, she felt that she should haveaccepted the emotional support that had been offered to her to help her cometo terms with this loss, which in any event was considered to have been heronly possible course of action. Another family, however, who had lost custodyof one of their children some years ago when she was only a baby, talked aboutthe effect that inadequate support had had on their confidence in their abilitiesas new parents. In particular, the requirement that the mother prove her abilityto look after an infant – while on an adult psychiatric ward and barred fromusing the staff kitchen to sterilise bottles or make feeds – was seen asoverwhelming and unfair. Her hand impairments also made using old-fashionednappy pins difficult; yet her difficulty in using them was interpreted as a deficiton her part, rather than the environment in which she was expected to parent.Subsequently, her lack of confidence came to be used against her and herhusband as evidence of inadequate skills, which was used to justify placingtheir child for adoption.

For single parents, there was sometimes the option of a child living primarilyat the other parent’s home. One mother, interviewed in Stage One and StageTwo (Family G), had three sons, one of whom had moved to live with hisfather, over 100 miles away. This was a result of his emotional and behaviouralproblems, which had been present in the years following his parents’ separation:he had ‘dissolved’ his mum to tears, and failed to keep to work plans with thechild psychologist and the social worker. In the Stage One interview, themother said that her son had decided that he wanted to go to his father, althoughshe was not sure whether her son now felt that he had made the right decision.However, just over a year later at the Stage Two interview, it became clear thatthere had indeed been significant difficulties. Her son (now aged 16) had lefthis father and his stepmother (who were apparently treating him poorly) andwas living at a friend’s house:

In the end it got really bad and he ran away to his friend’s house and they’vekept him there ever since and that was about 18 months ago.Mother, (MHI), single-parent family (Family G, Interview Two)

Her son, then, remained resident near to his father, but still a long way from hismother and younger brothers. While this seemed to be a difficult situation forhis mother, because of her concern for her son, it was a situation she could atleast accept, especially since having seen for herself the situation her son was

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now in. She felt that his friend’s family had “turned him around” and that hewas now looking forward to living with a group of other boys while taking hisA levels. It was also important to her that they were now very close emotionally,and that he visited her and his brothers regularly, for holidays and weekends6.However, at the second interview, she also talked about how it was difficult forhim to slot back in on these visits, and referred specifically to her mental healthimpairments:

It is hard because … he knows I’m not so well, I don’t do things. I don’t dothe washing up and I’ve got a thing, what people laugh at: … even though Idon’t do the washing up I don’t like germs, and if I don’t do it for four days allI do is just go squirt, squirt with the germ spray and walk away and leave it.But, they’re all so efficient and they want to do the washing up, “Come on[middle child], let’s do the washing up”. He doesn’t wanna do it, you know,and I say “Oh leave it, don’t worry about it”, you know. It’s just because helives in a different household.Mother, (MHI), single-parent family (Family G, Interview Two)

Parenting over time

As we specifically sought families with older children (who might be willingto be interviewed) in our recruitment strategy, our research includes moreinformation about parenting those children of school age. However, a smallnumber of families included young babies or toddlers, and many more parentswe interviewed also discussed issues relating to parenting younger children indepth. Here, then, our focus is on parenting children of pre-school age and onparents’ changing experience of their children’s education.

Parenting young children

Of course, when parents discussed difficulties in parenting younger children,what featured prominently were the issues of time limitations and tirednessfaced by all families. Some parents, though, felt that they faced specific physical,emotional and social problems. One mother we spoke to in Stage Two comparedher experience of having a baby prior to her ill health with her currentexperience of having a young daughter while suffering from ME. She herselfhad concerns that she was unable to provide her daughter with the range ofexperiences that her son had encountered. When she was first interviewed, herdaughter was six months old. Her ME had made it physically very difficult forher to get out of the house, and she was unable to drive. On the rare occasionswhen she met other mothers with small children, she could still feel isolated asa disabled parent:

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I mean, I think one of the things that I’ve learnt over the last year … as adisabled parent, disabled parents are not part of mainstream society at all. Imean, even when I go to an NCT [National Childbirth Trust] coffee morning,even though that’s quite rare, you are the only person, I mean, you’re therewith your walking stick, and you know, you’re sort of, sometimes you have toask other people to change a nappy, or lift the baby into the car.Mother (PI, MHI), dual-parent family (Family L, Interview Two)

Although she felt there had been an improvement in some aspects of herwellbeing, at the Stage Two interview the mother explained how, now herdaughter was older and heavier, childcare tasks could threaten her health,particularly by intensifying her fatigue. Since her son was now older, she hadthe option of involving him in caring for his sister, and she and her son wouldboth be involved in bathing her, and would split other tasks between them.She felt that, although they were adapting to circumstances, this was far fromsatisfactory. This family had been unable to gain access to any formal support,and their informal support consisted of a friend of the parents taking theiryoung daughter out for fresh air every day. The husband explained how hesaw the situation:

There is no provision for the children of disabled parents, especially youngchildren. You know, the children’s team won’t fund it ’cos the child isn’tdisabled, the disabled team won’t fund it because the child the parent wantssupport with helping isn’t disabled, you know?.… But to improve the qualityof life for both, somebody should say, “Right, well, this needs doing”, youknow, it’s a need that’s not identified. But hopefully with more and morepeople who are disabled having children, pressure will come to bear, but atthe moment people write rules and they like to put people in boxes and ifyou don’t fit the box there’s nothing there.Father, dual-parent family (mother, PI/MHI) (Family L, Interview Two)

The potential long-term impact of those particular stresses faced when caringfor young children and lack of support for parents provide a good example ofthe importance of looking at disabled parents’ experiences over time. For example,in one of our Stage Two families, the mother’s depression did seem to bespecifically postnatal, and later linked to demands associated to parenting a childwith autism. The father described his wife’s mental health history as follows.

Well we were married about two years when [our first son] was born andafter he was born [my wife] had … what they said was postnatal depressionand was ill for about four years. And sort of got over it a bit and had [oursecond son] and then she had it again for a couple of years and then we had[our third son] and we had it again for a couple of years. And then she gotbetter after that and then we found out about [our second son’s] disabilityand we had a lot of problems with the school he was at. So [my wife] was ill

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again after that and has been ill for about three years now. So she’s been illon and off for ... about 16 years now.Father, dual-parent family (mother MHI) (Family D, Interview One)

For others, postnatal depression was linked to physical impairment rather thanto a response to childbearing. For example, one mother found her impairmentshad deteriorated following her final pregnancy and subsequently experiencedsevere depression. It was only after this last pregnancy that her spina bifida-related impairments began to impact on her day-to-day life. She felt that, hadshe and her family been better supported during the early days, when she wascoping with small twins and her own impairments, her emotional problemswould not have been so debilitating. There were broader social and economicconsequences for the family. It was this profound depression, rather than herphysical support needs, that had led her husband to give up work to become afull-time carer.

Parenting school-age children: maintaining contact with schools

In Chapter Four of this book, we discussed the balance that parents tried tostrike between allowing young children to be involved in household activities(due to their desire to lend a helping hand) and ensuring that they would notbecome overinvolved. In particular, parents expressed the view that, as childrengrew older, the importance of them being able to concentrate on schoolworkand exams increased. However, while parents often felt that they were able toorganise their parenting within the home in a way that was satisfactory tothem, greater difficulties often emerged when they discussed the extent towhich they could gain positive working relationships with schools.

While many parents in our sample had no contact with social services, healthservices (other than general practitioners), the benefits system, or local authorityhousing departments (and so on), each one had direct experience of sendingchildren to school and of trying to maintain what they saw as satisfactorylevels of involvement with the education system.

Two thirds (44) of the disabled parents that we interviewed had been able toattend a parents’ evening in the past 12 months. The majority of parents werefairly satisfied with the level of contact they had with schools: 23 felt contactwas ‘good’, 25 felt that it was ‘adequate’, and 15 that it was ‘less than adequate’.However, interesting findings emerged from our data regarding the importanceof change in influencing the way in which parents were involved in school life.In particular, several factors often conspired to make it increasingly difficult forparents to maintain the level of involvement desired as their children progressedthrough the education system.

The number of parents who commented on the difference in terms ofaccessibility between primary and secondary schools was striking. The relativeinaccessibility of secondary schools was partially a straightforward issue of thephysical environment of the school. For example, several parents talked about

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difficulties they had encountered when attending open days at their children’snew secondary school, given the older architecture, the separation of schoolsinto various sites on a single campus, and the reliance on stairs both inside andoutside the school. One parent commented:

His secondary school has been much more difficult to access, although theyare trying to address it. Basically, it is a school built for non-disabled studentsand that affects us as parents.Father, dual-parent family (mother, PI, MHI)

Other parents talked about the assumptions that lay behind access problemsthey had encountered at secondary schools. One non-disabled father commentedon the fact that in recent years only he, and not his wife, had been attendingparents’ evenings:

In the last few years it has only been me really that’s been going to parents’evenings. The primary schools were much better, I think, because they have akind of pushchair mentality which obviously people using wheelchairs canbenefit from.Father, dual-parent family (mother, PI)

That primary schools are likely to take access issues relatively more seriouslybecause of the likelihood of parents also having pushchairs lends weight tobroader arguments concerning the willingness of schools to respond to theaccess needs of children much more positively than to the access needs of theirparents, despite the apparent overlap of interests between the two groups. Itcould be argued that more recent initiatives that have looked at disability, accessand education have been rigorous in their examination of the needs of disabledpupils, but less so with regard to the educational needs of the children ofdisabled parents (DfEE, 1999). Indeed, this reinforces our argument concerningthe invisibility of disability as a parenting issue (since research into disabilityand family life is dominated by a focus on childhood disability). Here, then, isa clear example of how disabled adults can be excluded from a key element oftheir parenting role.

However, the factors inhibiting involvement in secondary school educationwere not limited to issues of access; rather, they were compounded by otherinterrelated factors. For instance, one mother talked about a particularly difficultperiod when social services had contemplated placing her son on the ‘at risk’register. The strong relationship the family had established with their son’sform teacher at primary school was seen as extremely supportive, and the inputof the teacher, being a person who appreciated the problems faced by thefamily, was seen as very important. The mother contrasted this strong relationshipwith a single form teacher at primary school with the absence of relationshipswith teachers at secondary school.

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Distance is another factor exacerbating the difficulties of disabled parents’involvement in secondary schools. Primary schools are typically much closerto where children live than large secondary schools, since secondary schools’intake comes from a much wider catchment area (particularly in rural or semi-rural areas). This can often compound any transport and mobility barriers thatdisabled parents already face.

Closely related to this is the central role of parental choice in their children’sschooling, especially in the secondary sector, where children are increasinglylikely to attend schools other than the one closest to their home. One fatherdescribed the different ways in which the practicalities of family life had changedas his two children went from attending a local village school, which waswithin walking distance of their home, to attending a secondary school in thenearest large town, 20 miles away. This led to the loss of informal networks forparents and children alike, as other children from that year group went to awide variety of schools. While this happens in many families, the difficultieswere compounded by the fact that his wife was recovering from a period ofsevere depression, which had precipitated hospitalisation. Taking medicationmeant that she was unable to drive, forcing the family to confront the problemsthat the daily use of public transport often entails, especially as she did not havethe confidence to accompany her children to school. The family did receivesupport from the father’s employer, who allowed him to leave the office earlierand catch up on work later in the evening, and by the willingness of a familyfriend to ‘baby-sit’ the children at his office until their father was able to drivethem home from school.

This case illustrates how the changes that ordinarily occur as part of familylife, such as the progression of children through different parts of the educationsystem, can be experienced very differently by disabled parents. Our interviewsstrongly suggest that, when children move from primary to secondary school,it can be much more difficult, for a variety of reasons, for disabled parents tomaintain the kind of ongoing contact that they would like. This is particularlysignificant given the importance of the shift from primary to secondary schoolat a moment when parents might be successfully engaged and support offered(Henricson et al, 2001). Difficulties in maintaining contact with schools maybe particularly acute for parents experiencing dramatic change in other areas oftheir lives, and especially for those with progressive and deteriorating conditions.One single mother talked about the very rapid ‘death’ of her informal network.Not only had her son moved from primary to secondary school, but herimpairments had worsened and she had lost her only form of assistance withtransport when her own father had suffered a stroke.

Recent changes in parental impairment: onset andvariability

We now consider the extent to which parents felt as though their parentingresponsibilities were adequately understood by professionals. Often, with

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retrospect, parents felt that there had been a lack of awareness of the potentialconsequences of impairment and disability for people’s family lives. For instance,one father described his wife’s consultant delivering her diagnosis thus:

He said “You’ve got MS – some people change from butter to margarine.You’ve just got to get on with it”.Father, dual-parent family (mother, PI)

While for some parents impairments developed gradually over time, othersexperienced either a sudden (and often physical) development of impairment,or great variability (often mental health impairments). This group was ourprime concern throughout Stage Two of our research.

Sudden onset

Many of the respondents we spoke to in Stage Two had recently experiencedeither the onset of a condition or a traumatic injury. Parents often highlightedthe impact that this had had on their children, which could in turn lead togreater demands on them as parents. In two families, a parent had experienceda traumatic injury, as a result of a road traffic accident. In each case, the injuriessustained were reported as having had a particularly strong impact on the family’sdaughter, who wanted to be close to the disabled parent. One father describedthe situation as follows:

Our daughter has found it quite difficult to cope with mummy not beingquite as she was and … possibly she’s been traumatised by it because shewakes up at night at the moment, not every night but some nights, and shewants to come in and sleep with us. So we’ve sort of erected a sort of makeshiftbed, which we put up every night, next to our bed. But, and she’s fine, youknow, she’ll sleep there, but then mum can’t sleep, so she ends up going off toour daughter’s bed.Father, dual-parent family (mother PI), (Family A, Interview One)

Similar responses were reported from a mother who had recently started havingepileptic seizures. Her daughter had witnessed her first seizure and had seenher mother taken to hospital in an ambulance.

To be honest with you, when it first happened our daughter used to be a bit,she used to sometimes get a bit upset, because she used to think, you know,say she’d had a bit of a bad day at school, she’d sort of, like, come home, she’dthink, she’d be worried about me, a lot, at first, when she’d go to school.She’d, like, rush home from school to make sure that I was all right. And thatI had come home from work.Mother, dual-parent family (PI), (Family B, Interview One)

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Professional advice and support in relation to parenting seemed to be mostlikely to be forthcoming when impairments were seen as more stable andpredictable. A rare example of a father feeling that his doctor was more thanaware of his need to be involved in family life was given during our Stage Twointerviews. He had recently had his leg amputated, and there was concern onthe part of his consultant to organise operations in a way that would ensure thathe and his wife had a holiday with their children. His wife told us his story:

So right from day one when, when he was first in hospital and I said, “We’vegot a holiday booked in July, do you think I ought to cancel it?”. And he said,“No.” He said, “You want to try and go on that holiday, whatever happens,you’re going to need it by then”. So I mean, all along we’ve been askingevery time we’ve sort of, every month we’ve gone, “Are we still all right forthe holiday?”. “Yes, yes, you’re still going on that holiday.” Then when theproblems started with the knee, we said, “Does this mean that the holiday’sgoing to be … [cancelled]?”. He said, “No way, we’ll work, we will workround that, you give me your holiday dates and I will make sure we workround it”.Mother, dual-parent family (father, PI), (Family F, Interview Two)

While the mother was positive about the consultant’s family awareness, thefather did feel surprised at the extent to which the early input focused on hismedical needs when emotionally the family as a whole had other needs, suchas counselling support. He also felt his own emotional needs were overlooked,since while he was on the ward the hospital staff had seen him as a ‘coper’ andeven suggested that he try to cheer up another man who was not considered tobe dealing with his injuries so well. Therefore, even when health professionalswere family-aware, there could be a lack of psychological support for bothdisabled parents and their families.

Variability

When parents spoke about whether or not their impairments had an impact ontheir parenting, or talked about the support they required, a key feature was theextent to which their condition was viewed as stable. Related to this was theextent to which people felt future changes could be foreseen, and whetherparents felt that they could hope to maintain or achieve their desired level ofindependence (or interdependence). Concerns about ongoing deterioration,relapse, or more rapid variability could make thinking about the future difficult,especially when the family did not feel positive about the extent of supportexperienced, be that currently or in the past.

Many of the parents we talked to spoke about the importance of achievinga period of stability. For those parents who felt that they were currently morestable in their condition, it was clearly hoped that this would be something thatcould be maintained in the long term. For one family taking part in Stage

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The life course

One of our research, the father’s variable mental health impairments highlightedthe way in which families have to keep on adjusting, and how concerns anddifficulties can remain even where a previously ‘ill’ parent is currently perceivedas ‘well’. The father had needed extensive periods of sick leave from his job,since his severe anxiety and depression made it difficult for him to leave thehouse. At the time of our interview, he was pleased with his progress and withthe medication he was taking, and was back at work. His wife and daughterwere both keen to state that his problems were behind him, although his wifemaintained that she continued to be concerned about his future health.

Parents also talked about how they had learned more about their conditionover time, so that variability could eventually become more manageable.However, apparent improvements could also come at a cost for parents. Forinstance, a mother with ME (Family L) told us on our first visit that her levelof fatigue meant that she was unable to drive. On our second visit, she reportedthat she was able to drive now, but that it would have significant costs for herafter a trip out:

The fact that I’m driving now means that the fatigue is worse afterwards.So, I mean, I’m wiped out today because we took the cat to the vet yesterday…. Although it is a good thing that I can actually drive a little bit, it, it tendsto backfire on me because I’ll do something and then I’m, you know, sort ofcompletely wrecked for two or three days afterwards.Mother (PI, MHI), dual-parent family (Family L, Interview Two)

This need for self-care might be particularly difficult to express to services orthrough benefits assessments. This mother spoke of how it could be verydifficult for people with ME to access benefits, partly because of its variabilityand also because of the lack of recognition of it as a condition. Her concernwas widely expressed by those with variable conditions, and particularly thosewho had mental health impairments:

But certainly it’s something that is a cause of concern for anybody withdisabilities, the fact that they can just take your benefits off you like that, andit’s very worrying.Mother (PI, MHI), dual-parent family (Family L, Interview Two)

Likewise, variability in condition could also mean insecurity about access tosupport, and about future income.

Looking to the future

Planning for the future, then, is greatly affected by variability in impairments,and uncertainty about future services and benefits. Parents themselves spoke ofconcern (and sometimes fear) about their future, and that of their family, includingfinancial wellbeing and the potential physical and emotional costs of ‘caring’ on

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family members. We referred earlier in this book to Family C who felt theirpersonal resources to respond to the mother’s MS had been strengthened bytheir shared experience of the terminal illness of one of their children. However,the father did indicate that it was the ‘not knowing what might be round thecorner’, both in terms of the MS and of support, which made planning for thefuture difficult. Concerns about impairment and personal, family and socialresources were often discussed alongside economic concerns.

Finances

For some parents, the opportunity to stay in – or return to – work was a keyissue. Work could be seen as important for both financial security and socialcontact. For each of the Stage Two parents who had experienced traumaticinjuries, the question of whether or not they would be able to return to workwas of central importance. One parent received support, both from heremployers and a psychologist, enabling her to return to her professional job.The other was a father who had worked in a factory – he, on the other hand,experienced greater insecurity about a possible return to work. His employerhad said that they would keep his job open for two years, but he had alreadyreceived letters that offered him voluntary redundancy.

Never been on the dole in me life, I’ve always found something to do. I’venever been out of work and I don’t want to, I don’t want to sit and go to anoffice and sign on…. If I have to I will do but I, I’ll strive to get a jobsomewhere…. I’ll feel like I’m just dragging everything out of the systemand I don’t want to do that I want to – I still want to put into it if I can, butif I can’t in the end, well, I’ll have to accept that, but then that’s going to be abit more of my self-respect gone.Father, dual-parent family (PI), (Family F, Interview Two)

Concern about future employment among parents who had a longer experienceof impairment, and who had remained in work, was greater when variabilitywas a feature of the condition. There were cases of extremely supportiveemployers, but it was often unclear whether this support would be maintainedin the long term. Only 12 of our parents had any regular paid employment;therefore, in dual-parent families where a partner had continued to work, theability of the partner to stay in employment was often a key concern:

As I say, you know, the pressure’s on me, well, to carry on working. I mean, …there’s two … pensions or, you know, I’ve got to provide a retirement for twoof us. There’s not many people know that, once you finish work, you cannothave a private pension. That’s one of the first things that happened, when mywife finished work. Before we got any benefit, or anything, there was a letterthrough from the … pension company to say, “The pension’s on hold”.Father, dual-parent family (mother PI), (Family C, Interview Two)

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The life course

Similar pressures were felt in families where neither parent was employed. Afather discussed how he and his partner might use a future inheritance, giventhe lack of access they had to financial services, particularly mortgages andpensions:

So then we’ve got to think right, well, we’ve got to put all that money into ahouse, we won’t get a mortgage ’cos we’re not working. I mean, it’s the same,same thing as, like, you can’t get a pension if you’re not working. I mean a lot,a lot of these things you find out over the course of time.Father, dual-parent family (mother, PI), (Family L, Interview Two)

Parents therefore did discuss the impact of disability on current and futureplans, and often felt that information to support this was gradually accruedrather than readily available.

Conclusions

Our study has focused primarily on current support needs, but we have alsobeen able to sketch out some of the key issues involved in parents’ experiencesof family life over time. It is important to include what might be viewed as‘mainstream’ experiences (such as contact with schools and financial security)alongside other factors specific to the experience of disability and impairment.Our research highlights that experience of disability and parenting over thelife course must be grounded in the changing social and economic frameworkwithin which parenting and family life takes place.

Our focus has been disability, time of onset and variability in impairmentwith reference to the life course. Some of the parents we interviewed discussedthe impact of negative attitudes towards disabled people becoming parents: weargue that this reflects their relative invisibility (in contrast to ‘young carers’) inpublic and policy discourses. It is clear that, for some of our respondents,having a family was achieved despite a lack of support or approval from others,including both family or professionals. Indeed, within our sample we foundclear evidence of how disabled people were actively discouraged from expectingaccess to Priestley’s (2000) two cultural signifiers of independent adult life –employment and parenting. Negative attitudes could continue to be expressedby professionals from the beginning of pregnancy through to parenthood. Whileparents would often welcome information concerning parenting with animpairment, some clearly felt that they were being given little room to make,and little respect for, their own decisions (for instance, about having more thanone child), given the explicit disapproval of others.

What our research has also highlighted is the potential long-term impact ofthe demands of parenting young children alongside little or no support. Forexample, physical or mental health impairments – even where they predatedhaving children – could be exacerbated by (and experienced as) creating day-to-day difficulties for the first time having become a parent. Our brief review

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of changes in family shape and the later onset or impact of impairment (afamily life course) highlights the importance of understanding the experiencesof impairment and of disability in the context of relationships. This is the focusof Chapter Six.

Notes

1 Normative concepts of the life course are extremely influential in shaping social policy,and the invisibility of disabled parents reflects the way in which disabled people areoften excluded from such expectations of adulthood.

2 Each of the parents in our sample had children aged at least four years. Consequently,our research did not focus on the experience of becoming a first-time parent.

3 Since our sample does not include disabled people who did not become parents, wehave been unable to consider what factors are important for those who decide not tohave children, or feel that they were dissuaded from becoming parents.

4 Unfortunately our sample did not include a sufficient number of fathers to measurewhether or not disabled men had felt similarly limited in their expectations, and howthese expectations had impacted on their experience of becoming parents.

5 Despite having only two fathers in single-parent or reconstituted families on which todraw, their experiences suggest to us that fathers feel more limited than mothers do intheir ability to make decisions about how to involve their children in disability-relatedfamily issues. This is likely to be due to the higher level of involvement of mothers inthese cases than we found of fathers in the other single parent or reconstructed families.

6 Research has not yet paid sufficient attention to the difficulties faced by childrenwhen returning to live for brief periods with their disabled parent. Instead, it hasconcentrated on the experiences of resident children. This situation is perhaps moreoften relevant to disabled fathers, and merits further attention.

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Individuals, families and relationships

SIX


Introduction

This chapter restates our commitment to a social model of disability, enabling usto identify the social and environmental barriers that disable parents. Throughoutthis book, we have used our data to argue that a commitment to enable, supportand underpin family roles and relationships must be central to any appropriateintervention. We further stress here that, for many disabled parents, the extentto which they are able to access roles and relationships both inside and outsideof the family can have an impact on how they experience the parenting role.

In reporting individual experiences of parenting we must also explicitlyrecognise that tensions exist between individual and collective approaches tothe experience of impairment and disability. We clearly reject any solelyindividual approach to disability that locates the experience of disability withinindividuals rather than within families or wider relationships. The dominantoutcome of our research has been that adequate theoretical understanding ofdisability and parenting is only possible within a framework that encompassesboth the social and the personal factors that shape people’s experiences ofimpairment, illness and mental distress.

This chapter is our contribution to a critique that some disabled writers (forinstance, French, 1993; Crow, 1996) have made of the capacity of the socialmodel of disability to encapsulate fully their experience of impairment, whilerecognising that this is not its raison d’être. In doing so, we begin to reconsiderhow impairment is conceptualised. Within this research we wished to comparethe experiences of parents with physical impairments and parents with mentalhealth impairments. While conducting the study, it became clear that while amental health ‘diagnosis’ (or ‘impairment’) was one way in which distress mightbe defined, in any final analysis both mental health impairment (usually definedby doctors) and mental distress (that is, a personal experience) ought to beconsidered. This involves building on the development of social modelapproaches to mental health and therefore moving away from relying on aconcept of ‘mental health impairment’ to a consideration of ‘mental distress’.So, as we highlighted earlier in our discussion of terminology (see page vii) wenow refer primarily to mental distress.

Our theme throughout this chapter, then, is that parenting stands at theintersection of public and private worlds. In other words, while our socialmodel enables us to identify the social barriers that shape disabled parents lives,it is also important to understand the personal ways in which this is experienced.

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We believe that this approach can help to contribute to the social model’s‘renewal and continued relevance’ (Shakespeare and Watson, 1997).

Disability, relationships and parenting

Much research thus far into the experiences of disabled parents has taken anindividual, medical model approach (see Chapter One of this book). Bymaintaining a focus in our research on the barriers that parents face in theirparenting role, we have also sought to distinguish between impairment anddisability in a way that is consistent with a social model of disability.

Impairment is the functional limitation within the individual caused by physical,mental or sensory impairment. Disability is the loss or limitation ofopportunities to take part in the normal life of the community on an equallevel with others due to physical and social barriers. (Barnes, 1991, p 2)

This distinction is the basis of academic research, disability campaigns andtheoretical development that has located the discrimination and exclusion ofdisabled people in social organisation. It enables us to maintain a focus on thebarriers facing disabled people when they attempt to access and maintain sociallyand personally valued social roles. For us, then, taking part in ‘normal life’ isnot to be understood simply in terms of the individual operating in the socialworld as an atomised body. Rather, a personal experience of the ‘normal life ofthe community’ inherently involves relationships with others (friends,neighbours, colleagues, family, and so on). This fact is obscured by reducingsuch relationships to distinguishing the ‘carer’ from the ‘cared for’. Indeed,approaches that polarise the interests of disabled people and ‘carers’ fail toacknowledge shared concerns in relation to community care policy and practice(Parker and Clarke, 2002).

We have been eager to explore barriers in the parenting experience of theparents in our survey within the context of family roles and relationships. InChapter Three, for example, we detailed the experiences of parents of not havingtheir family role as a parent taken into account by others (such as social services,health services, and the private sector). For example, we saw how a ‘strong’partnership between disabled parent and partner could aid access to servicesand information. Yet such a partnership could also be considered by those sameservices as a sign of sufficient personal resources, leading, ironically, to inadequateformal support being offered. Elsewhere, we examined the way in which afocus on parental ‘care needs’ has led to the identification of ‘young carers’ as awelfare category. Our assertion – that supporting relationships means supportingpeople to enjoy a relationship with their children or partner beyond the limitedcategories of social services – is within the context of social disablement. However,as Beckett and Wrighton have argued, opening up aspects of personal relationshipsto services can make disabled people feel vulnerable:

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Expressing needs related to social interfacing becomes particularly difficultif it also means making visible feelings and relationships more commonlyexperienced in the private sphere. (Beckett and Wrighton, 2000, pp 997-8)

Yet the relationships that disabled people have with friends and family membersrequires considerations beyond limited welfare categories.

Partners’ relationships

While some single parents did talk about previous relationships, separationswere often discussed in terms of other difficulties faced beyond impairment ordisability (see Chapter Five). However, in their review of the psychology ofdisability, Finkelstein and French (1993) report that those who acquire substantialimpairments frequently experience serious problems with their relationships,particularly if those relationships were already under strain. Furthermore, Morris(1989) reports that the onset of impairment and disability can exacerbate pre-existing tensions within relationships. Our research suggests that this is oftenas a result of the demands imposed by a community care system that oftenequates the existence of a partner with a primary source of ‘care’. Through ourreview of the way in which assistance was provided informally within familyrelationships, it is clear that for many married or cohabiting disabled parentssupport at home was mainly provided by their spouse.

Disabled people and their partners often emphasised that support within therelationship was a feature of their personal commitment to one another, ratherthan of an adoption of ‘carer’ and ‘cared for’ roles. However, the managementof impairment, the experience of disability, and the difficulties raised by illnesscould lead to frustration (and in some cases resentment) within the relationship.Many couples were placed under extreme pressure by an expectation on thepart of formal services that partners would provide extensive support, evenwhen this was felt to be barely possible. That is, becoming a ‘full-time carer’was often by default rather than choice: concerns about a disabled parent’squality of life (and even safety) led to partners leaving their jobs or being laidoff when their home commitments became incompatible with employment.Partners could feel there was considerable pressure on them to stay well, whetherin terms of maintaining employment or providing assistance at home. Forexample, one husband and wife had both experienced mental distress, and theyshared the same mental health diagnosis. The husband considered himself tohave recovered and wished to stop taking medication. However, he could not,because of his concern with what would happen if both he and his wifeexperienced severe mental distress at the same time.

Disabled parents also voiced their concern about the impact a lack of alternativesupport was having on their partners’ health. While parents or partners onlyrarely stated that the pressure was threatening their commitment to theirrelationship, parents often expressed anxiety about what would happen ‘should

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anything happen to him/her’. This source of this anxiety was perceived as athreat to both the partner’s health and to the health of the relationship itself.

There was often great awareness of the importance of both the disabledparent and the partner maintaining other roles. For example, maintainingemployment, education or voluntary activity was viewed as highly importantfor both financial and personal reasons. In some cases, parents indicated how arecent onset of impairment had altered the balance of their relationship. Thismay have been due to that fact that the opportunities for pursuing externalroles had changed, or the allocation of tasks within the household had changed.Or, perhaps, the (satisfactory or unsatisfactory) degree of a partner’s understandinghad become an issue.

Even when partnerships were experienced as mutually supportive, there couldstill be discomfort experienced throughout changes in the relationship. A motherinterviewed at Stage Two of our research told us how she and her partner hadpreviously been relatively ‘independent’, with both having nights out withother friends as well as with each other. Now that she was medically unable todrive and consequently less spontaneous in her social life, she was moredependent on her partner’s availability:

I wouldn’t say that … he likes me being tied to the kitchen sink. SometimesI say to him, “Hey, you like this, don’t you. ’Cos I can’t get out and about”.You know, that sort of thing.Mother (PI), dual-parent family (Family B, Interview One)

Other parents, on the other hand, reported how their relationship had beenstrengthened alongside concerns about feeling too dependent on their partner.Reduced mobility for one parent (whether related to physical impairment ormental distress) could mean that they were less likely to be able to access otherfriendships and that the presence of their partner became more important tothem. These parents articulated how they wanted to ensure that their relationshipdid not develop into an overly dependent or ‘care’ relationship, but this wasdifficult, given a lack of alternative support. This was very often the case interms of emotional support: some parents stated that they did not want to relyexclusively on a partner (or friends), but that a partner was usually the mainavailable listener. In Chapter Five, we touched on the experience of a fatherwho had recently experienced a traumatic injury, and was concerned that neitherhe nor his family had received any form of counselling. Of his relationshipwith his partner, he said that:

It’s really, well, we were close anyway. I don’t think we could be any closer.…[But] when she goes out on Tuesdays and Fridays, them two hours, I hate it.… She needs to have a break from me, and I hate it…. Sometimes I say toher, “I wish you didn’t have to go today”, just to make a joke of it, and she’llsay, “Well, I don’t have to”, and I say, “Yes, you do”. And she’d stay at home

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and we’d just sit here all day, just sit like you and I are sitting, doing nothing,and just sit talking. And we’ve never been so close as we are now.Father (PI), dual-parent family (Family F, Interview One)

In a small number of two-parent families, partners who had extensiveinvolvement in supporting their disabled partner indicated that this had had anegative impact on their relationship1. At its most extreme, one husband, whohad stopped working to support his wife through a physical impairment thatcaused her extreme pain, stated that it was like having “lost my wife”. Anotherman, whose wife experienced mental distress and would retreat upstairs leavinghim with the children, felt he had “half a wife”. Others referred to feeling likea lone parent. Often these statements were made specifically in terms ofhousehold tasks, for instance that the disabled partner rarely (if ever) cookedand cleaned, or would withdraw from activities with the children. In suchcases, then, people were referring to the fact that a previously predictable rolehad altered beyond recognition. However, negative feelings about the currentstate of a relationship could also be overtly linked (for both partners) to theimpact of tiredness, frustration, and emotional distress, which were often theconsequences of a lack of other sources of support as well as the demands ofthe parenting role.

Parents and partners sometimes expressed the view that, of the people withintheir community or friendship network, those with experience of disabilityhad been of most support to the family. This support through understanding wasalso experienced within the parents’ relationship. For instance, some parentsbenefited from their partner having also experienced mental distress. For example,one mother told us about previous poor relationships that she had experienced,and about her current relationship with a man who had also had periods ofdepression:

Its helping my depression – he’s very understanding and can reassure me. Butsome of them have just been using me and I didn’t really understand what Iwas doing.Mother (MHI), single-parent family

In relation to mental health, partners’ understanding of the distress could impacton how the relationship was experienced. For example, anticipated improvementthat was not realised sometimes lead to despondency. One father describedhow his marriage was going through “a rocky spell” – he linked this to hishope that, after nearly 20 years of his wife’s depression, some level of improvementcould be reasonably expected. For him, this frustration was exacerbated by herreluctance to accept support (such as membership of a depression supportgroup). In another family, a wife whose depression was not improving felt thatthis made it more and more difficult for her husband to cope, which had anincreasingly detrimental effect on their relationship.

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Experience of the parenting role

Parents were often keen to state explicitly their feelings about parenting withreference to their own sense of identity. This research provides greater detailabout mothers because there were more women than men in our sample.However, women did seem to be more likely to talk about how motheringwas, or might be assumed to be, central to their sense of self. Therefore, somemothers reported strong maternal feelings, while others reported that motheringwas not instinctive or central to their self-identity. However, feeling thatmothering was not a central role did not mean it was not a valued one. Forinstance, one mother told us that, while she was not strongly maternal andcould have ‘gone without’ having children, she was deriving great pleasurefrom her son.

The extent to which people had access to other roles clearly had an impacton how they felt about parenting. We have already mentioned how few of theparents in our sample were in employment, although this was not always seento be the result of parental impairment. Some full-time parents stressed thattheir children benefited from them not working. They presented this as meaningthat more love and warmth was provided to their children. However, havingchosen to be a full-time parent was perceived more positively than having full-time parenting presented as a fait accompli given as a result of being excludedfrom the workforce. For example, in the case of a disabled mother who alreadyvalued the role of homemaker and did not see impairment or disability asbarriers to other possibilities and opportunities, gender rather than disabilitywas the main structuring factor. However, other parents spoke of lonelinessand other distressing circumstances. One woman whose employment andmarriage had ended after the onset of her mental distress felt bereft of any role.Not only did she feel that she was being stopped from having more children,but she also found it difficult to say what exactly it was that she enjoyed aboutparenting. When expressing sadness that she would not have more children,she focused on the importance of the infant care-giving role.

I would like to – nobody would let me – all my kids are in four- to five-yeargaps. I feel I have no role at the moment. I just sit at home and do nothinguntil I pick up the children. Nobody will let me have more children.Mother (MHI), single-parent family

The parenting role could also be interrupted, for example, by a period ofhospitalisation or ‘respite care’. Even when this respite was generally perceivedby the parent as positive, it might still disrupt parent–child relationships. Onewoman explained that her children sometimes said that she did not care aboutthem, and that this was partly a reflection of their lack of understanding abouther mental distress. Her regular respite – when her children stayed with their(reluctant) father, or a mother’s friend – was particularly difficult for them. Onreturning home, there could be strains in their relationships:

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I get a hard time when I come home.Mother (MHI), single-parent family

Children’s responses to parental absence could heighten parents’ wish to havea strong presence in their children’s lives, as well as their concern about howevents were affecting the child. For some parents there was continued orsometimes increased involvement in their children’s day-to-day lives, and anawareness of children’s relationships with other significant adults. One motherwas struck by her daughter’s attachment to her teacher, which was highlightedto her when, on a school trip, the daughter moved from the group she wasmeant to be in (that is, with her mother) to go to sit with her teacher:

I thought “Oh gosh, here’s another role. I’m not doing very well for rolesthis week”. Lose the mothering role in a minute. My daughter wouldrather be with her teacher.Mother (PI), dual-parent family (Family A, Interview Two)

The daughter’s teacher had showed particular interest in her daughter’s artwork, and, in a later interview the mother referred to the teacher as ‘quite amother figure’ who had indeed had a positive relationship with her daughter.The mother was currently on sick leave from work, and hence the reference torole loss was related to some dissatisfaction at not currently being involved inprevious professional responsibilities, rather than implying less involvement withher children.

Other parents were deeply concerned that others were taking on part oftheir parenting role in their day-to-day lives. This was sometimes expressed interms of disability. For example, one mother expressed how her husband wasbecoming more responsible than she was for her baby daughter and this wasbecause of a lack of home-based support that could have helped her to manageher myalgic encephalomyelitis (ME). However, others did locate this in termsof their impairment. For example, one woman felt that her children had learnedher ‘limitations’ from an early age, and so were more likely to go to their fatherfor support or advice.

Children’s understanding of impairment

Some parents had difficulties explaining their impairments to their children.For others, however, it was considered either straightforward or unnecessary.For instance, one mother told us that she had not really talked to her childabout her multiple sclerosis (MS) beyond reassuring her that she was not goingto develop it just because her mum had. Others just said it might come up ingeneral conversation, but that there was no real need to sit and discuss theimpairment in detail.

On the whole, parents felt it was important that what information wasprovided to children came primarily from them. This did not mean that parents

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did not appreciate support in explaining the nature of their impairments totheir children (although such support was rarely available). Only in relation toMS did we find parents who had found information suitable for young children– a book about a mother with MS available from a voluntary sector organisation.

Clearly, some impairments were more difficult for children to understandthan others. However, parental experience of a particular impairment couldvary significantly between families. In one family, for example, where a fatherhad MS, his wife felt that the children had simply developed an understandingof it, and so there was no need actively to explain or discuss it:

No – we just live with it really. Because it’s fairly stable, we know it quitewell, so we live with it. It doesn’t keep catching us by surprise – it’s familiarto us. We know the problems and get around things.Mother (Father, PI), dual-parent family

However, when there was greater uncertainty, parents could try to strike abalance between telling children too much (and provoking possible anxiety),or too little (through being overprotective, cautious or uncertain themselves).For example, one woman said that she speaks to her children about her ownMS:

as much as I can. It’s not like you can say this is how it is – no set pattern.Mother (PI), single-parent family

This mother raised another issue expressed among some of those who hadvariable conditions: that it could be useful to be able to ask someone else toexplain an impairment or distress to children. When she had a relapse, she saidshe was unable to talk to her children about what was happening, and said thatnot only would she have liked more information herself, but also she wouldhave liked someone to have been available specifically to talk to her children.Another single parent, this time experiencing depression, explained how aprofessional key worker’s input had helped her child to understand what washappening.

I wanted her to [explain to my daughter] as I was really quite low one day andacting not quite right. A few weeks ago – it was the first time anyone talkedto her about it. It was helpful – made her feel that it was not all her fault.Mother (MHI), single-parent family

It is a delicate balance to strike: arming a child with enough information toprotect them (from taking personal responsibility for the parent’s impairmentor distress, and from unnecessary fears, for example), but also protecting themfrom taking on greater responsibility for the parent’s continued wellbeing as aresult of having greater information. Some parents wanted their children tounderstand medication, for example, but not for them to feel overly responsible

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for it. Furthermore, in relation to parental mental distress, some parents wantedtheir children to have an understanding that it was ‘not their fault’, but at thesame time wanted to protect them from the traumatic personal experiencessometimes associated with it, which might involve wider family relationships.The extent to which children were involved in regulating of the amount ofinformation they received about impairment was also interesting. One singleparent stated that she answered her children’s questions about her mental distressbut did not want to keep reminding them about her own problems. Anothersingle parent, whose impairment arose from post-polio syndrome, told us thatshe tried to give her daughter information but that “she doesn’t like to thinkabout it”.

Parents sometimes reported that, as children grew older, they could becomemore self-conscious about parental impairments. This could be overtly linkedto bullying experienced by children as they started secondary school and weremeeting new children. And some parents anticipated future difficulties despitethe fact that parental impairment had not yet been an ‘issue’ in their children’srelationships:

[The children] know no other so its not had an effect. I do have potentialfears – especially at [son’s] school – they don’t know and he might get teased.Father, dual-parent family (Mother, PI)

This is an example of how the barriers faced by people with impairments arereproduced in the lives of those close to them. Some children said that, whenthey needed someone to talk about difficulties faced by their disabled parent,they had a number of friends and friends’ families that were available. However,other children said that they had kept these difficulties entirely to themselves,or had been very definite about which friends they were able to talk to. Somechildren did talk about a lack of understanding from others, and/or theirembarrassment in discussing their parent’s impairment. Therefore, their ownpersonal experience of their parent’s impairment and disability was not somethingthat was made public. And when it was made public, it could be experiencedas embarrassing or upsetting. One daughter said:

Just keep it to myself – it is embarrassing to talk about it because nobody elsehas a mum like that.Daughter (12) (Mother, PI), dual-parent family

She indicated that she had been ‘called names’ in her village, and her fathercommented that her those of her own age “have highlighted things before”about her mother’s impairment.

Parental mental distress could be particularly difficult for children to talkabout to other children. This can be understood in the contexts of difficultiesindividuals themselves face in developing an understanding of mental distress,the dominance of the medical model in public understanding (including genetic

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explanations), and media and policy focus on risk, danger and mental health.For example, one daughter found it difficult to invite friends back to her home.She had told none of them about her father’s mental distress, and having testedthe water she felt uncomfortable and unsafe about disclosing this information.She herself found her father’s erratic behaviour and his distress uncomfortableand difficult to understand. The story line of a young man experiencingschizophrenia in a TV soap opera, however, had helped her gain some moreinsight into her father’s behaviour and feelings, in part through understandingher father’s diagnosis (manic depression) as illness2.

What is clear, then, is that the private experience of disability and impairment– on the part of parents and children alike – is influenced by external relationshipsand perceptions. Tanner highlights very clearly the personal consequences ofpressure to conceal her mothers’ mental distress, both within and outside thefamily:

Reflecting on my childhood and later experiences, I feel that much of mydistress and discomfort has been caused, not so much by inherent features ofthe ‘aberrant’ behaviour of my mother, but by the shame and stigma associatedwith that behaviour; in other words, by socially constructed phenomena ratherthan ones appertaining to either my mother as an individual or the familyunit. (Tanner, 2000, p 290)

Wider attitudes towards impairment and distress, and a lack of contact withothers who had direct experience of disability, could clearly lead some childrento be unable to draw on the support of others their own age.

The social model, impairment and illness

Our discussion raises questions about the extent to which (and ways in which)parents distinguish between their experiences of impairment and of disability.Some parents clearly did so, and this was most often the case when impairmentwas stable, predictable or highly manageable. Indeed, we have already statedthat within our research there was a small number of parents for whom accessibleand adapted housing, good transport arrangements and financial security havemeant that their impairment is largely insignificant to their involvement inparenting activity. Other parents, however, placed illness and impairment at thevery centre of their parenting, such as when a parent feels sad at not being ableto pick their child up to comfort them when they have hurt themselves, orcarry a child upstairs to put them in bed when they are asleep:

It’s the small things, like when the kids were small and they would fall asleepdownstairs, I would have loved just to scoop them up and take them upstairs,but I couldn’t. It’s not a big thing but sometimes I do regret not being able todo that kind of thing.Father (PI), dual-parent family

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For some parents, then, an inability to do something with or for one’s child cannot be replaced by the hands and arms of a personal assistant. Parents alsoexpressed concerns about the extent to which their ability to be fully involvedin childcare and other family activities was limited by exhaustion resultingfrom impairment. One woman, who had rheumatoid arthritis (RA), said:

For me tiredness is a major factor affecting family life. It is a symptom ofRA and is a major problem. I can walk but I know my limitations and haveto watch what I do. It’s in the legs so it is about knowing limitations.Mother (PI), dual-parent family

This woman highlighted how she had to develop her own strategies in orderto be able to avoid severe bouts of tiredness. Support enabling individuals tomanage such difficulties was often expressed in terms of self-support and familyinput. Parents experiencing mental distress often found it particularly difficultto highlight ways in which their family life and personal relationships couldhave been improved by input from formal services or in terms of the removalof barriers. They often referred to insufficient or inadequate health servicecare, rather than a lack of social support. This was expressed in terms ofunsatisfactory aspects of the medical management of distress, waiting lists forpsychotherapy, and the difficulty in achieving referral to a community psychiatricnurse. When support was received, it was often outside the home (in hospitalor a day service); consequently, professionals rarely had contact with partnersor the wider family.

Renewing the social model?

Pain, fatigue and emotional distress are important aspects of many impairmentswhich parents in this study discussed in relation to their parenting. A numberof writers who have worked within the social model approach have arguedthat integration of the lived experience of impairment into the social model ofdisability will enable a richer understanding of the way in which social barriersoperate. For instance, Crow has put forward an argument for a renewed socialmodel of disability that focuses both on disability as a social concept, and theindividual’s bodily experience of their impairment over time. She concludesthat:

Disability is still socially created, still unacceptable and still there to be changed;but by bringing impairment into our total understanding, by fully recognisingour subjective experiences, we will achieve the best route to that change, theonly route to a future which includes us all. (Crow, 1996, pp 72-3)

Her argument is that, by downplaying the bodily experience of impairment(such as pain, fatigue, emotional distress), some disabled people are at risk ofbeing alienated by those focusing exclusively on the social origins of disablement.

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Indeed, this distinction between impairment and disability has led to uncertaintyabout who exactly the social model of disability includes. The issue is particularlyvague in relation to those people impaired through chronic illness, learningdisability, or mental distress.

Others have argued that the division between impairment and disability istoo simplistic. This arises from a tension which we highlighted at the beginningof this chapter, between the need for a model that focuses on the collectiveexperiences shared by all disabled people on the one hand, and, on the otherhand, one that takes account of the different ways in which impairments areexperienced in a disabling society. French (1993), for example, discusses herown experience of visual impairment with reference to the social model, andhas described her own inability to read non-verbal cues as a barrier tointerpersonal communication. She suggests that such a barrier could beunderstood as ‘something in between’ impairment and disability. She recognisesthe importance of challenging the ways in which a link is routinely madebetween impairment and illness (or other ‘symptoms’ of impairment, such aspain), but feels, too, that these should not be wholly ignored.

Many authors recognise both the political power of a clear-cut separationbetween impairment and disability, and the difficulty this raises in terms ofwhat constitutes an impairment. A failure to integrate this issue into the theoryrelegates an understanding of impairment to physical/medical explanation.

Indeed, there is a powerful convergence between biomedicine and the socialmodel of disability with respect to the body. Both treat it as a pre-social,inert, physical object, as discrete, palpable and separate from the self. Thedefinitional separation of impairment and disability which is now a semanticconvention for the social model follows the traditional, Cartesian, westernmeta-narrative of human constitution. The definition of impairment proposedby the social model of disability recapitulates the biomedical ‘faulty machine’model of the body. (Hughes and Paterson, 1997, p 329)

Such mind–body dualism can be oppressive to those experiencing mental distress,as well as those with physical or sensory impairments. One mother informedus that, although she felt that her adult-onset epilepsy could be personallyunderstood as the result of the extreme – physical and emotional – stress (itselfthe result of medical negligence), this understanding was dismissed byprofessionals. It was important to her that we heard about the difficulties sheand her family had faced prior to her first seizure, since her impairment hadbeen boxed off elsewhere as a solely medical issue. This point is also oftenextremely pertinent for people experiencing mental distress.

Encompassing physical impairments and mental distress

That we included parents experiencing ‘mental health impairments’ in oursample, and that we used this term, rather than terms such as ‘mental health

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problems’ or ‘mental health difficulties’ throughout the book, reflects our beliefin the importance and relevance of a social model approach to this group. Inaddition, mental distress can be experienced by people with physical impairmentsand may be considered a ‘symptom’ of impairment and/or rooted in socialdisablement. It has been argued more and more that the social model of disability,as applied to physical and sensory impairment, has an important resonance forthe mental health service users’ (or survivors’) movement (Beresford, 2000;Johnstone, 2000; Sayce, 2000). It is important, too, for the development of‘holistic’ mental health social work, which acknowledges damaging socialresponses to mental distress as well as the social (personal and structural)precursors of it. Tew (2002) highlights the importance of broadening anunderstanding of a social perspective in this way, since there is a tendencywithin social work to limit the social to practical issues such as benefits andhousing. In contrast to the disability movement, the mental health users’movement has been focused on gaining reform within the mental health servicesystem, rather than by directly challenging the system. This focus is not surprising,given the difficulties identified among our sample in accessing support frompsychiatric and psychotherapeutic services, and the despondency expressed aboutpsychiatric wards. This has had consequences for the development of a socialmodel of distress:

The mental health service users’/survivors’ movement has not yet developedits own philosophy – the equivalent of the social model of disability – and hastended instead to accept implicitly a medicalised individual model of ‘mentalillness’ relying on a range of euphemisms like ‘mental health issues’ and ‘mentalhealth problems’ to try and distance itself from the illness construct. However,mental health service users/survivors are now beginning to explore a ‘socialmodel of madness and distress’ located within the framework of the socialmodel of disability. This is likely to have significant implications for the socialmodel of disability as well as survivors’ own conceptualisations andunderstandings of madness and distress. (Beresford et al, 2002, p 393)

The conceptualisation of impairment within the social model of disability hasbeen a stumbling block to those writing from the mental health perspective.These writers reflect the feelings of many of those diagnosed with a ‘mentalillness’ or using mental health services that their distress cannot (or at leastcannot fully) be understood as a question of biological function. Plumb, forexample, rejects this broadening of the social model of disability in order toencompass mental health:

[I]n keeping with the perspective of Mental Health System Survivors … Iattribute my experiences not to chemical imbalances or aberrant genes (physicalimpairment) but to my life’s experiences within the culture and social structureof society. (Plumb, 2002, p 118)

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If we conceptualise mental distress not simply as illness, but either wholly or inpart as a response to current socioeconomic and family difficulties, or to pasthurt or trauma, a more subtle approach to the social causes of disability iscrucial. This has a broader relevance, including psychiatric diagnoses:

If one area of impairment is disputed as ‘real’, why should there not be asimilar deconstruction of other medical categories within the impairmentclassificatory scheme. (Barnes et al, 1999, p 62, cited in Beresford and Wilson,2002, p 551)

One barrier to the alignment of mental health service users with the disabledpeople’s movement might be the extent to which people experiencing mentaldistress identify themselves as disabled. Beresford (2000) argues that, whendisability theorists have tentatively included mental health service users withina definition of disabled people, they have done so in a way that simply medicalisestheir experiences of distress as illness. This is a direct result of the way in whichthe social model of disability is based on the distinction between impairmentof the body and the disadvantage that results from social organisation. Individualsdiffer widely in the way in which they conceptualise their mental distress. Forinstance, dagnosis of ‘mental illness’ is often the trigger for psychiatricintervention, yet ‘diagnosis’ of a mental health condition is not the only way inwhich a need for support due to emotional pain or ‘madness’ can be understood.When understood as illness, this might be represented to some as an impairmentthat is distinguishable from the person’s social relationships and personal history.However, within our sample we found that this is necessarily the case: peoplecan have complex understandings of their impairments, and discuss both an‘illness’ and previous experiences that were seen as contributing to it.

For example, one single mother described her ‘psychotic depression’ as a ‘hiddendisability’, which she felt had not been identified early enough – indeed, she feltthat it had already begun when she was a young child. Alongside this werepersonal events and difficulties throughout her life that, at the very least,exacerbated her depression. Long waiting lists for psychotherapy and the lackof social support, however, meant that the support she received was, in the main,medical, with little opportunity to develop a personal understanding of distress.

Not identifying oneself as ‘disabled’ may reflect a refusal to take on anadditional identity that is perceived as negative. This may be particularly so inthe case of those people already identified as ‘mentally ill’. However, thisrefusal does not exclude an awareness of social barriers to full participation infamily relationships or wider social life. For example, Tierney (2001) has drawnboth on her own personal experience of anorexia and from her research withwomen who either defined themselves – or had been medically labelled – as‘anorexic’. She found a social model approach useful: while her respondentswould not define themselves as ‘disabled’, they did highlight social barriers thatimpacted on their relationships (particularly in terms of the disabling attitudesof others). She also considered the different ways in which her specific

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experience had been understood by others, and the way in which mentaldistress is rarely understood in terms of the social barriers she faced, both as aresult of others’ responses to her body and the lack of accessibility of buildings:

During the eight years I have been labelled ‘anorexic’, my situation has beenreferred to in various ways: madness, female hysteria, illness, attention seeking,brain disorder, hereditary, family problem, media created. However, ‘disabled’is one definition society has declined from imposing on me, even though atone point I became reticent to leave the house because of hostile stares and Iwas sometimes unable to attend school because the [flight of] ‘stairs’ there alsoproved a barrier to my emaciated frame. (Tierney, 2001, p 749)

Parents in our study who experienced mental distress also highlighted thesebarriers. Perhaps it is unsurprising that mobility was an important issue tomost of these parents who identified themselves as disabled, given the prominentcampaigning around transport and access for people with physical and sensoryimpairments. We have already seen that, while three quarters of our respondentswho had a primary physical impairment identified themselves as a disabledperson, only one fifth of those experiencing mental distress did so (althoughtwo others said that they sometimes considered themselves to be disabled).These six respondents were two mothers in dual-parent families who had beendiagnosed as having agoraphobia; a single mother and a married mother whowere both experiencing chronic depression; and a mother and a father (both indual-parent households) who had been diagnosed with manic depression. Bothparents who experienced agoraphobia were clearly very restricted in terms oftheir mobility, which may in part explain their identification as a disabled person.The mother with manic depression also had a physical impairment (which sheconsidered to be secondary to her manic depression) that could make it moredifficult for her to use public transport. She felt, however, that her physicalimpairment was underrecognised by other family members who were irritatedand embarrassed when she tried to get assistance (when travelling by train, forinstance). A mother whose severe depression began suddenly following atraumatic experience had also become much more limited in her ability to getout and about, both locally (finding it difficult to talk to neighbours) and onpublic transport. Public transport was also a difficulty for the single motherwith depression, who explained how she struggled getting the right money topay the bus driver. Others experiencing mental distress with no physicalimpairment, and who did not identify themselves as disabled, also expressedtheir difficulties in getting out and about. In one sense, this might be understoodas ‘impairment as barrier’; however, there was also a clear absence of community-based support that might have increased people’s confidence and reduced theirdistress.

The argument for a social model approach to disability that is inclusive ofmental distress is strengthened further when we consider even more theexperiences of some parents who have physical impairments. For example:

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Disabled people may feel negative and depressed about their situation becausethey have absorbed negative attitudes about disability both before and afterbecoming disabled, and much of the depression and anxiety they feel may bethe result of other people’s attitudes, poor access, non existent job prospectsand poverty. (Finkelstein and French, 1993, p 31)

This corresponds to the way in which some parents with physical impairmentsin our study talked about mental distress; that is, not as an ‘illness’ or a directconsequence of impairment, but linked, rather, to the social difficulties theyfaced. Partners also mentioned the emotional difficulties they faced, oftendescribing them in social rather than medical terms. For example, a singlemother who had a physical impairment spoke of how a lack of support fromher ex-husband, living on benefits, and only minimal home-care support wasnot conducive to her emotional wellbeing. However, a father in a dual-parentfamily did speak of his depression as being wrapped up in his physicalimpairment, but also talked of adjustments which he did not yet feel ready tomake, such as using a wheelchair, and of other people’s embarrassment (that is, theimpact of others’ attitudes) towards his impairment.

For Tew, social relations and interpersonal relationships are of paramountimportance in his proposal for a social model of mental distress:

[A] social model locates experience [of distress] within an understanding ofsocial relations in which power plays a determining role, both in terms of‘macro’ scale structural inequalities in relation to gender, ‘race’, class, age, sexualorientation, and so on, and in terms of the ‘micro’ scale dynamics of conflict,exclusion or abuse that may take place within families or other intimate socialcontexts. (Tew, 2002, p 147)

The perception of families as ‘causal agents’ of distress or disability has been acore component of psychiatric and psychotherapeutic approaches to ‘mentalillness’ over the past century. This is a significant barrier to the inclusion offamilies within policy and practice in mental health, despite the fact that, as wehave seen, families are often expected to be “the lynchpin of community care”(Jones, 2002, p 248). Tew (2002) argues that, in contrast to some medical andpsychological approaches that can marginalise family members, a social modelapproach can support recognition of the distress that might also be experiencedby them.

Pathologising parents and their relationships can in itself be a barrier toaccessing support. Pertinent issues were raised by Tanner (2000) in her reviewof Crossing bridges, a Department of Health training pack for people workingwith ‘mentally ill’ people and their children. She finds that, while the departmentpays lip service to structural factors, the approach is in fact rooted in medicaland family models that pathologise individuals and their relationships. Withinour sample, one mother with physical impairments who also experienceddepression told us that an attempt to label her with Muchausen’s-by-Proxy

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formed part of her conflict with social services. Family members’ experiencesof illness, impairment, housing difficulties, economic difficulties and socialisolation were thought to have been relegated to the bottom of social services’concerns. We also spoke to one mother whose long-term depression beganafter her father died, and she felt this was exacerbated by the birth of her sonsome years later. Her grief about her father’s death had implications for herfeelings towards son, and yet she had found this very difficult to articulate toher GP. Fear about conveying difficulties in parenting relationships can simplybe fear about a child being taken into local authority care. While this was notthe outcome in this case, the actual fear had meant that she had spent two yearsparenting while experiencing severe emotional difficulties with little externalsupport.

There are differing views as to whether or not the social model of disabilityis (or should be) inclusive of those experiencing mental distress. We should notassume that a social model – developed largely out of the experiences of thosewith physical and sensory impairments – is fully able to include all of thosewho experience disability. However, we have found it an important tool inexamining the barriers facing those parents with mental distress (with or withoutphysical and/or sensory impairments). This is particularly the case with referenceto access to social care and to social security benefits.

According to Beresford et al (2002), grouping together mental health serviceusers and disabled people into one administrative category in order to deliverfinancial and social support is one good reason why the disability movementand mental health service users need to engage with one another. This isimportant, given the low level of disability benefit receipt and of social work orother formal support that we found among parents experiencing mental distress.Among the six respondents whose primary impairment related to their mentalhealth, only three received any form of disability benefit, such as DisabilityLiving Allowance (DLA) or Incapacity Benefit. (Perhaps this explains whythey also identified themselves as disabled.)

Parents experiencing mental distress often dismissed disability benefits andhome care support as irrelevant to them (or – if relevant – inaccessible), evenwhen needs were identified. Formal service involvement in alleviating mentaldistress was often through individual medical and psychotherapeutic approaches,although other (usually unavailable) options were preferred.

It’s hard – I know [my daughter is] OK but I find it hard. Nobody else helps.I didn’t like the way I was treated in hospital – I wanted a rest at home for afew days and someone to take responsibility for the cleaning so I could bewith my daughter.Mother (MHI), single-parent family

Disability, then, was recognised by parents. And in order to qualify for otherforms of support (such as benefits) that might reduce both their experience of

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disability and of distress, people accepted medical diagnoses and intervention(measurement and management of their ‘impairment’).

Qualifying for disability benefits may also depend on the acceptance of medicalexplanations of madness and distress. It may also depend on taking or beinginjected with prescribed drugs that may have damaging and dangerous effects.(Beresford and Croft, 2001, p 19)

We have already considered how relationships between family members can beundermined when inappropriate labels (especially ‘carer’ or ‘young carer’) areapplied. Families may privately resist the application and use of such labels, yetat the same time accept them in order to access public services or highlight thelack of formal support. Watson (2002) found that many people with physicalimpairments do not privately identify themselves as ‘a disabled person’, indicatinga resistance to this public categorisation. He suggests that identifying oneself asdisabled is hardly a positive step, given current social values that demean disabledpeople. When such identification does occur, it may be in part due to otherproblems in that person’s life that come to be understood as resulting from, orlinked to, impairment.

So, identification as a disabled person involves tensions between public andprivate experiences and understandings. We would argue that parenting throwsthese tensions into particularly sharp relief, given the intensely public and privateaspects of that role.

Conclusions

When approaching parent’s support needs from the basis of a social model ofdisability, then, the experience of mental distress in particular can representsomething of a conundrum. While impairment might be identified as beingthat within the private body, and disability as originating from the social andcultural context, mental distress itself can be understood in biological, personal,interpersonal, social and sometimes even spiritual terms. The question, however,is not whether or not social disablement is relevant to parents experiencingmental distress (since it clearly is). Rather, what is required is the developmentof a social model of mental distress, as well as an examination of the sharedexperiences of exclusion with other disabled people.

It is a challenge, of course, to examine the complex social networks that spanpublic and private worlds. However, it is absolutely necessary when consideringthe experiences of disabled parents. The challenge, then, is not only in terms ofour understanding of the processes involved, but also in terms of service response.We have stressed throughout this chapter that an awareness of family relationshipsand roles can be instrumental in enabling parents to take part in a ‘normal life’within the family and community. In addition, this suggests that disability ismost clearly understood not only from a social perspective, but also that policiesthat focus on individual care needs are disabling both to people with impairments

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and those closest to them with whom they face barriers in achieving the‘normal’ interdependent relationships of family life.

We are not arguing that ownership of the disabled parents’ experience shouldbe claimed by non-disabled family members. Rather, we are arguing that asocial model approach can highlight how disability not only has an impact onindividuals who have impairments, but also on those with whom they haveclose relationships where disability is a central part of their life experience. Italso suggests that the divisiveness of publicly identifying people as belongingto certain administrative categories (for example, ‘carer’, ‘disabled’) can bechallenged by bringing the private and personal experiences of family life intoclearer focus.

We have argued in favour of a social model that gives greater space to adiscussion of impairments, and the experience of impairments. The constructionof disability as a purely social phenomenon, or as ‘oversocialised’ (Bury, 1996,p 35), will struggle to adequately encompass the experience of disabled parents,given the parallel nature of parenting as at once an intensely private yetprofoundly public role.

Notes

1 As a result of the fact that our sample included more disabled mothers than disabledfathers, our examples are more often than not fathers discussing their wives or partners.

2 The portrayal of an experience of mental distress within a family context may alsohave been relevant here.

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Conclusion

SEVEN

Conclusion

Introduction

This book began with a discussion of the invisibility of disabled parents inmainstream policy and practice concerning parenting and family support. Thisinvisibility is sustained and reinforced by the common assumption that parentsare – or, at least, should be – non-disabled. We hope this book, then, bysustaining throughout a focus on disabled parents, has contributed to the processof addressing this invisibility.

Our study has been concerned with the promotion and realisation of theequal opportunities of disabled people to establish families, and care for children.In contrast to much current research, furthermore, it has not been about thesearch for negative outcomes in children, nor for pathological failings in disabledpeople. We hope the result is a significant contribution to what is an excitingperiod in the development of a disabled parents’ movement in the UK, and toa greater awareness on the part of policy makers and practitioners about theimportance of parenting responsibilities for many disabled people.

There are limits, however, to our study. In particular, research with a largersample is required so that data with greater explanatory power can be collected.However, a purely quantitative approach is inadequate, given the many complexand interacting factors that structure the environment in which disabled peopleparent. The quantitative data presented throughout this book stand, we argue,as a springboard for subsequent research, since they point to important factorsin structuring the experience of disabled parents.

Our study has not been about service users, although many parents in oursample were using one or more of a variety of healthcare and social care services.In a sense, this is a weakness of our research: we have not been able to focus ingreater depth, consequently, on the way in which a particular service (for instance,child and adult social-work teams) responds to the parenting of disabled people.However, in our defence, carrying out research with a group of people definedonly by their status as disabled parents as we have done, and not by their receiptof a particular service, has many advantages. Firstly, it avoids a service-ledapproach. Secondly, it allows us to look at parenting and disability in a muchmore ‘bottom-up’ and ‘normative’ way. That is, it allows us to look at theparenting experience of a group of disabled people as it really is, and not filteredthrough administrative and welfare categories.

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Challenges for disability theory, policy and practice

We have explored a wide range of important issues concerning disabled parents,such as education, employment, social and healthcare services, informal networks,poverty, housing, leisure and transport. In addition, we have tried consistentlyto view the experiences of disabled parents, and other family members, in waysthat recognise the importance of change. In other words, both impairment anddisability are not static; rather they change both in terms of severity and interms of their impact on family life. Likewise, individuals and their relationshipschange – people get older, families develop, dissolve and reconstitute. Thestructural environment in which disabled people parent is also subject to change,for instance in employment patterns, benefit receipt, housing status, and so on.

Making support accessible for parents with fluctuating and unpredictableimpairments is clearly a major challenge, then, although we also argue that thechanging context in which parenting takes place can have significant implicationsfor the parenting of disabled people with quite stable and predictableimpairments. It is a challenge to the ability of services to respond adequatelyto disabled parents and their families. It is also, however, a challenge to ourtheoretical understanding of disability, and we have argued that a life-courseperspective is crucial in understanding impairment and disability over time.

We have emphasised throughout our research findings the different ways inwhich disabled parents manage both their parenting role, and the disabilitythey encounter. Disabled parents are an extremely varied group, as are non-disabled parents. This variation is reflected not only in the wide range ofimpairments that disabled parents experience, but also in parents’ access to (anduse of) formal and informal support and material resources, employment andhousing status, their ethnicity and age, their children’s age, and their political,practical and emotional response to disability and impairment. Disability istherefore only one of many factors that structure the experience of parentingfor people with impairments. It intersects with other issues that are part of abroader, common experience of parenting. These include poverty and ‘socialexclusion’, gender roles and family shape, employment choices, environmentalstresses and supports, the nature of family relationships, and the active role ofchildren themselves in shaping the parenting experience. Throughout theresearch, we did not seek out the single experience of disability and parenting,or the solution in terms of support. What we have done, rather, is to create aspace in which a multitude of hitherto ‘absent voices’ – those of disabled parents– could be heard.

The design of our research enabled us to explore diversity and difference, notonly in terms of the experience of disability and parenting for those in oursample, but also in terms of their political orientation to it. The social model ofdisability seeks to explain the experience of disability with reference to attitudinaland physical barriers to the inclusion of impaired people in society. Crucially,many researchers who have adopted and developed the social model approachto disability have worked hard to avoid integrating impairment into their theory,

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Conclusion

as part of a wholesale rejection of the medical model. However, we haveargued – as do disabled writers, such as Liz Crow – that the social model canbenefit from an attempt to integrate the experiences of impairment into aconsideration of the way in which social barriers operate. In particular, wehave argued that a neat separation between impairment (with its roots in thefunction and workings of the body) and disability (a social experience) is easierto sustain for people experiencing physical impairments than it is for thoseexperiencing mental distress. Mental distress can have physical, biological andsocial origins and explanations; therefore what is required is a renewal of thesocial model to incorporate mental distress. This is particularly important giventhe location of parenting as both a private and public activity.

Towards more equal opportunities

Our work has pointed to the many ways in which disabled people face extrabarriers in fulfilling their parental responsibilities. These include barriers to theuse of formal and informal sources of support as well as those barriers that canbe erected when the judgements of professionals restrict the options availableto families in terms of assistance. Most important of all has been our argumentthat the kind of support that disabled people require in parenting their childrenis intrinsically no different from the kind of support that all parents need. Thislist is hardly exhaustive, but basic requirements surely include:

• an adequate income;• housing that meets the needs of all family members;• appropriate informal support;• the opportunity to have a break from caring for children;• the opportunity to take an active part in the education of children;• the opportunity to get out and about as a family;• the opportunity to deal with problems (for instance, bullying) that children

face;• the ability to access mainstream facilities in the public, private and voluntary

sectors.

However, the barriers that disabled parents face in accessing some or all ofthese sources of support are of central importance, and we would argue thatthe focus must remain on dealing with the barriers that restrict disabled peoplefrom parenting on a level playing field. This, rather than the erection of newforms of welfare provision founded on the principle that disabled parents’support needs are ‘special’, should remain the central organising principle ofinterventions designed to support disabled parents.

This is particularly important in the context of current developments insocial policy towards families and parenting, and in particular the centrality of‘ecological’ perspectives on parenting in the Framework for the assessment of childrenin need and their families (DoH, DfEE and HO, 2000). In Chapter One, we

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argued that there are inherent tensions in this framework between a willingnessto understand parenting that takes place within the structural parameters ofpoverty, social exclusion and so on, and an attachment to individual capacity asthe key factor in assessing the quality of parenting on offer, and the likelihoodfor positive change. It remains to be seen how this tension is played out.

On the basis of our data, however, we argue that this persistent concentrationon capacity within ecological perspectives on parenting can not be fullyreconciled with an approach to disability grounded in a social model approach.We have also pointed to the ways in which disability intersects with otherforms of exclusion and disadvantage in the parenting experience of disabledpeople. Indeed, disability itself can only have meaning when experiencedthrough these other forms of exclusion. Socioeconomic disadvantage andgender are particularly powerful factors that mediate not only the experienceof parenting, but also the way in which barriers are erected. This focus ondisability as one of many factors that influence the equal opportunities ofdisabled people as parents requires that we acknowledge both the commonalityof the experience of disabled parents as well as structural divisions in thatexperience. In other words, all disabled parents will share experiences basedon physical and attitudinal barriers to their participation in parenting, butsome disabled parents will have more in common with non-disabled parents.With these non-disabled parents they will share experiences based on gender,economic disadvantage, ethnicity and sexuality, for example, to a far greaterextent than they can with disabled parents who are more removed from themin terms of these other experiences.

Children, parents and the meaning attached to domesticand ‘caring’ work

Although we have stressed that our sample is not necessarily representative ofdisabled parents generally, our data indicate that children are involved in generallylow levels of domestic and ‘caring’ work. This low level of involvement ispartially the result of a lack of need for assistance on the part of many disabledparents, but also of strategies devised by disabled parents and their partners inpreventing the involvement of their children in what could be labelled ‘caring’roles. This can be to the detriment of disabled parents’ health and to the healthof their partners, as we have seen, since they behave in ways that exacerbateimpairments, or leave them with less energy to manage family life.

The data do not highlight any differences in the likelihood of boys and girls,or older and younger children, being labelled a ‘young carer’. However, inresponse to a range of questions, both single parents and their childrenindependently reported higher levels of involvement, and a greater degree ofsole involvement and/or responsibility for providing assistance than was thecase for dual-parent families. This should alert policy makers and practitionersto the additional support that single disabled parents may require in order notto have to rely inappropriately on their children. It also alerts us all to the

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Conclusion

importance of family breakdown (and the creation of a ‘new’ single parent) asa possible precursor to children being drawn into providing inappropriate levelsof assistance.

From our discussion in Chapter Four, it is clear that the absence of alternativesources of support hinders parents’ efforts to prevent their children frombecoming ‘young carers’. Assistance aimed at preventing the children of disabledparents from becoming ‘young carers’ must be based on a broader understandingof these factors:

• the meaning attached to domestic and caring work by family members;• the place of ‘caring for’ parents as an aspect of caring about parents within

family dynamics;• the role of children themselves in adopting, negotiating and resisting caring

roles.

In particular, our data point to the way in which the discursive framework forexplaining and managing children’s involvement in housework is entirelydifferent when it is concerned with younger – as opposed to older – children.This is important, given that children as young as three or four years of agehave been labelled as ‘young carers’ in the literature.

Future directions

Disabled parents have been talking about the barriers they face for some timenow, often in publications that do not reach academic audiences. The increasingnumber of personal accounts has been complemented by an increase inpublications looking at parenting from a social model perspective, and at aspectsof women’s experience of disability that necessarily deal with issues ofchildbearing and child rearing. However, high-quality research on disabilityand parenting that is grounded in social model thinking is still in its infancy.

What the current literature is sorely lacking are reliable and valid statistics onthe numbers of disabled parents in the UK. Not only would these statisticsgive greater weight to the political process of getting disabled parents’ issueshigher on policy agendas, they would also provide an important backdrop tothe more qualitative and evaluative work that has yet to be done.

What is also currently lacking is a research method that engages with boththe actual and the potential development of innovative services for disabledparents. This would include work on the importance of – and access to –direct payments for disabled parents; the evaluation of service provision aimedat disabled parents; and the ways in which barriers to accessing mainstreamservices and facilities (across a wide spectrum of sectors) can be tackled.

The issue of ‘access to parenthood’ also requires far greater attention than itcurrently receives. By ‘access to parenthood’ we mean the extent to whichyoung people who grow up disabled feel that parenthood is a role open tothem, as well as the ways in which they manage transitions to adulthood and

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the opportunities (or lack of them) for partnering and parenting. There isalready an extensive literature on the transitions of disabled people to adulthoodfor this work to build upon. However, we believe that it needs to extend theconcept of transition to include choices around parenting. It would thereforeinclude choices and barriers in fertility treatment, genetic counselling, accessto fostering and adoption for prospective disabled parents, and so on.

Two other issues that we would have particularly liked to explore within thisbook are ethnicity and racism in the experience of parenting and disability. Wewould argue that research that examines the way in which barriers to parentingoperate for disabled parents from minority ethnic communities is particularlyneeded.

Finally, our understanding of parenting and fatherhood is particularlyunderdeveloped. Studies of disabled parents, both from the medical modelperspective of clinical studies and the social model perspective, have thus farfocused almost exclusively on disabled mothers, and have uncritically allowedparenting and mothering to be seen as one and the same thing. We havepointed in this book to the barriers that disabled parents face to their parentingrole. In particular, disability can often be used as a mechanism for denyingcustody of – and access to – children in the legal system, and disabled parentsfrequently talk about their concern about access to their children followingseparation and divorce. Of course, the other significant risk factor for beingseparated from, or denied access, to children is fatherhood and it is thereforeparticularly important that we develop an understanding of the particular barriersfaced by disabled fathers in accessing parenting roles.

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Appendix One

APPENDIX ONE

Methods

Introduction

In Chapter One, we argued that the literature on parenting and disability wasdominated by medical, rather than social, model approaches. This appendixdescribes the methodological dilemmas we faced in attempting to address thisabsence, and the methods we used in response.

Key variables

This study was informed partly by concerns about the way in which policy,practice and research around ‘young carers’ had gained an almost hegemonicpre-eminence as a way of looking at parenting and disability. A key aim of ourstudy, therefore, was to address the factors that might enable disabled parents toavoid dependence on their children for ‘care’. However, it was important toaddress two particular issues that the ‘young carer’ literature had identified assignificant: parental mental health impairments, and the presence of one orboth parents.

The ‘young carer’ literature highlighted not only the significant number ofchildren caring for parents with mental health impairments, but also the particularnature of that caring experience (Dearden and Becker, 1995, 1998). In addition,parental mental health impairments have featured strongly in research on, amongother things, the incidence of child abuse (Sheppard, 1997), child protectionprocedures (Dartington Social Research Unit, 1995), and the characteristics ofchildren ‘looked after’ (Bebbington and Miles, 1989). Consequently, we designedour study in a way that enabled us to compare the experiences of parents withmental health impairments with those of other disabled parents.

The ‘young carer’ literature also pointed to the likelihood that children ofsingle disabled parents will be less protected from involvement in caring activitythan those children who have two co-resident parents (the assumption beingthat the other, implicitly non-disabled, parent would act as a buffer betweenparental disability and child involvement). It was important for our study to bedesigned in such a way as to allow comparison between single-parent anddual-parent families. Our materials and analysis, and the data presented in thisbook, are therefore frequently couched in terms of these two variables, whichwe have termed impairment group and family shape.

We were also aware that an understanding of the experiences of disabledparents would be impossible without reflecting adequately the importance of

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change. Our focus, therefore, was also on the changing impairments andchanging barriers that parents face, changes in the needs of children as they ageand develop, changes in the socioeconomic circumstances of the family, and soon. A further, second stage, of the research was therefore devised, structuringour study in Stage One and Stage Two.

Stage One

Stage One was designed to provide a retrospective and descriptive survey ofhouseholds containing a disabled parent (or two disabled parents) and one ormore dependent children. It was important to gather quantitative data so thatwe could analyse our findings in terms of the two key variables, impairmentgroup and family shape. However, we also wanted to capture the complexways in which parental disability intersected with other important issues. Wewere aware that we would struggle to capture this complexity were we to useresearch instruments that were too closed. In addition, we felt it was importantto gather the views of both parents and children. We decided to interview onechild aged between seven and 18 years in each family1.

Pilot work

We conducted preliminary pilot work in order to organise research tools in asensible and coherent way, as well as to ensure that the content and structure ofthese tools were meaningful to disabled parents. Stage One, then, began withpilot interviews with seven families with a variety of parental physical andmental health impairments, encompassing both single-parent and dual-parentfamilies. They were carried out, in most cases, with parents and children present,and the interviewees were recruited from a variety of sources, including a localorganisation of disabled people, through word-of-mouth and personal contact,and following news items in local newspapers.

The pilot interviews were open-ended discussions about parenting anddisability, and the discussions covered a wide range of issues. These interviewswere recorded, transcribed and used to inform the design of the main StageOne questionnaires. We then returned to each family and reinterviewed themusing these draft questionnaires, simultaneously seeking further feedback fromfamily members and assessing the utility of each set of questions before producingfinal-draft questionnaires2.

The parent questionnaire

Several writers have argued that research that does not recognise the essentiallysocial nature of disablement is likely to enhance – rather than challenge – theoppression of disabled people (Morris, 1992; Barnes, 1996). This has led to callsfor a fundamental rethinking of the social relations of research production(Oliver, 1992), and for research into disability that is grounded in a commitment

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Appendix One

to empowerment. In the development of the parent questionnaire, then, wegrappled with several issues, particularly a commitment to working within asocial model of disability.

We approached our research with a keen sensitivity to these debates. Inparticular, we sought to anchor our methods in a social model perspective thatseeks to identify the barriers to participation in parenting facing disabled parents.However, our experience in the pilot stage told us that, in compiling thequestionnaires, we would have to perform a balancing act between taking thisapproach and allowing space for parents to talk about the impact of theirimpairments on parenting. In other words, we had to devise research instrumentsthat were sensitive to the fact that, in the real world, disabled people conceptualisedisability in ways that reflect social and medical model thinking. Ourquestionnaires, then, reflected a social model approach that nonetheless allowedrespondents to talk as freely as possible about disability and parenting. In otherwords, we were keen “to allow space for absent voices” (Morris, 1992, p 159).

Of particular significance was the way in which we decided to record andcategorise parents in terms of impairment. Parents often found it difficult tospecify a particular condition, diagnosis and point of onset. This was particularlythe case for parents with multiple impairments, and for those who questionedtheir current diagnosis by an ‘expert’. Most important of all, this was also thecase for those reporting both physical and mental health impairments wherethe significance of each, and the relationship between them, were confusedand/or intricate (for example, parents who had been diagnosed as sufferingfrom depression for many years only for their symptoms to be rediagnosed asmyalgic encephalomyelitis, or ME).

As our research developed, we found that any simplistic attempt to allocatefamilies to discrete categories of impairment was problematic. In addition,placing parents in a series of groups based on single and multiple impairmentgroups would leave too few parents in too many boxes for meaningful analysis.We therefore decided to ask parents to describe their impairments and, if theycould, to identify what they thought their ‘primary condition’ to be. Thisenabled us to analyse the data, where appropriate, in terms of a binary distinctionbetween those parents who reported having primarily physical and/or sensoryimpairments and those who reported having primarily mental healthimpairments. This division in the sample is used frequently throughout thisbook in the presentation of quantitative data. In addition, we made a point ofasking all parents whether they ever experienced any mental health impairments,whether diagnosed/treated or not. This enabled us to carry out further analysiscomparing those reporting ‘any’ mental health impairments with those reporting‘none’.

The child questionnaire

Several authors have pointed to the way in which studies of children andchildhood have traditionally been concerned with what kind of adults children

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will become, and what kind of adulthood they will enjoy, be it in terms of childdevelopment, or in terms of socialisation (see, for example, James and Prout, 1990).

[T]he treatment of childhood phenomenon as notable primarily in terms ofwhat children are supposed to become, rather than what they actually are,positions children as a passive or deficient social group, being relentlesslypushed towards full adult (and therefore social) status. (Mizen et al, 1999,p 426)

We recognised, then, the importance of including the views and experiencesof children as social actors in their own right (Qvortrup, 1990) – it is importantfor children’s voices to be heard. We recognised at the outset that it might bedifficult for some children to talk about parental disability and that, despite oursensitivity to current ‘good practice’ in obtaining informed consent from childrenin social research (Alderson, 1995), many children might feel uncomfortable intaking part. Yet they feel obliged to do so given their parents’ involvement. InStage One especially, with no scope for introductory visits and the establishmentof a longer-term rapport with children, it was important to design aquestionnaire that was as non-threatening as possible. Consequently, it involveda relatively closed set of questions on family life, while at the same time providingspace for further comments for those willing to share more. We asked about arange of issues that the literature, especially about ‘young carers’, had told usmight be important for the children of disabled parents, including the extent oftheir free time, their contribution to domestic and caring work, their experienceof bullying, and so on.

The children’s questionnaire also allowed us to gather data on issues centralto debates about ‘young caring’, by adapting Looking After Children (LAC)materials routinely used for assessing outcomes for children looked after in theUK (Ward, 1995). In particular, we saw an opportunity to engage with childrenon the issues of ‘false maturity’ and the performance of age-inappropriatedomestic tasks and responsibilities. As part of their development, the originalLAC schedules had been tested on a community sample of children in the late1980s. We therefore wrote several of the questions on the child questionnairein a way that would enable us to compare the experiences of the children ofdisabled parents in our sample with those in the original community sample(see Appendix Two of this book).

The adaptations necessary to use the LAC schedules had some importantconsequences. Firstly, the approach of the LAC materials is to assess the extentto which children have reached appropriate developmental milestones (forinstance, their ability to do simple first-aid by the age of 12, or to deal withorganisations such as the Department of Social Security by the age of 17, andso on). They do not assess whether children have learned, or are carrying out,tasks at too early an age. In addition, they do not assess the frequency withwhich children are carrying out particular tasks or roles, or the level ofresponsibility children have for these tasks. For instance, being able to cook a

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Appendix One

hot meal may be a valued developmental goal, but not necessarily for a child ofeight, and not if it involves ongoing responsibility for hot meals within thefamily, both issues of importance in reflecting on debates about ‘young caring’.

In order to address the issue of ‘false maturity’, we adapted the LAC schedulesby drawing relevant questions from three of the age-banded assessment andaction records (ages 5-9, 10-15, 16+) and addressing them to the children inour sample. However, in addition to being asked questions from their own ageband, the seven- to nine-year-olds in our sample were also asked those questionsdrawn from the 10- to 15-year-old schedules. Similarly, the 10- to 15-year-oldsin our sample were asked, in addition to their own, age-appropriate questions,those drawn from the age 16+ schedules. This enables us to say something notonly about differences between the children in our sample and their age-matchedpeers in the community sample, but also about the extent to which the childrenin our sample were unusually young in their ability to carry them out. Inorder to address the problem of assessing frequency with which children areinvolved in domestic and self-care tasks, we devised a grid in which childrenwere asked to list the range of things they did in the house, and the frequencyof their involvement.

It is important to recognise the limitations involved in our adaptation ofLAC materials. Firstly, the LAC schedules themselves were not designed toassess problematic levels of caring and domestic activity in the home. Rather,they are about ensuring that children are developing ‘normally’, and, for olderchildren, that they are ready to leave care with a set of life skills that willpromote independence. Indeed, Newman (2000) has pointed out that theLAC materials are somewhat ambiguous about the value and worth of children’sinvolvement in work per se. Secondly, the first version of LAC schedules, usedwith the community sample, was administered jointly with parents and childrenup to the age of 15; for the under-10s, questions were addressed to parentsrather than children (Moyers, pers. comm.). In this study, our approach was tointerview children alone (or in the presence of a parent if requested to do so)and the questions were directed at children irrespective of their age. This limitsthe extent to which we can make concrete comparisons between the childrenin our sample and those in the original LAC community sample. As aconsequence, we have interpreted the data cautiously when looking at them inAppendix Two.

The partner questionnaire

The emphasis in the partner questionnaire was on the way in which familieshad adopted different roles for spouses. The scope was inherently limited byour focus on family shape as a variable, and the need to recruit adequate numbersof single-parent families to make this viable. The parent questionnaire, therefore,had to cover all aspects of parenting and family life, leaving the partnerquestionnaire to concentrate on issues particular to dual-parent families.

Two particular issues were important in the design of the partner questionnaire.

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First, we were aware that some partners would also be disabled. This allowedus to explore assumptions made in the ‘young carer’ literature about theimportance of (implicitly non-disabled) partners as a buffer against children’soverinvolvement in domestic and ‘caring’ activity. However, we had to decidehow to ‘allocate’ which parent to which questionnaire. There were dangers insimply administering the parent questionnaire to the parent with the mostsevere impairments. In doing so, we would be adopting a medical model, byassuming that parenting issues are more likely to be ‘driven’ by the severity ofimpairments rather than the social roles adopted by the parents, the structuraland social barriers faced, and so on. On the other hand, it was also importantnot simply to administer the main parent questionnaire to the ‘most involved’parent, such as a stay-at-home mother, as this would risk excluding fathersfrom our sample. It would also hinder the exploration of issues for thosedisabled parents who were in employment. In the small number of familieswhere both parents were disabled, we explained to parents the differencesbetween the two questionnaires, and left them to choose who would adopt therole of ‘parent’ for the purposes of the research. The partner questionnaire wasthen designed so that those partners identifying themselves as disabled wereasked a series of further questions about their own support needs and barriersto participation in parenting.

Second, we took the opportunity to centre the partner questionnaire on theissue of roles, and changing roles, with regard to parenting. Consequently, itcontained questions that focused on the degree to which their involvement inparenting was a product of parental disability. We did this in order to avoid thepitfall of assuming that, for instance, a high level of partner responsibility fordomestic tasks was inevitably the product of parental impairments. Instead, wewere interested in whether parental disability led to a reorientation of partnershiproles (for example, with the partner taking on some of the parenting tasks that,other things being equal, would be less likely to have been done by them). Wewere then able to explore how families managed such changed roles, for instancein regard to non-disabled partners feeling sole responsibility for the disciplineof young children given mobility impairments in the disabled parent, or thecomplex issues involved, for instance, in fathers providing guidance on personalissues to teenage daughters. We were also interested in the role of the partnerin pursuing support for the disabled parent and for the family. This enabled usto explore the way in which formal support (or the absence of it) promotes orundermines existing family relationships (an important theme that runsthroughout this research).

Stage Two

The aim of Stage Two was to explore the experiences of a small number offamilies where a parent had recently experienced the onset of impairments.We envisaged that the disruption to family roles and responsibilities would begreatest at these times, given the likelihood of prolonged hospitalisation,

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Appendix One

uncertain prognosis, the sudden transformation of the world in terms of reducedaccessibility, and so on. The aim was to speak to the families as soon as possibleafter the onset of impairment, and then again after nine months, allowing thedevelopment of key issues to be followed and critical incidents to be analysed.

We wanted to recruit 12 families, with four involving parental traumaticinjury, four involving progressive conditions, and four involving severe mentalhealth impairments. We planned to conduct initial interviews with the parents(jointly and separately), with follow-up interviews also involving one child inthe household. Initial topic guides were developed covering key areas that wewanted each interview to address, although the emphasis was on families beingable to highlight significant issues in a more open way. The topic guides wereinformed by ‘critical incident’ techniques, a well-established approach to socialresearch involving the identification of key events and experiences (Flanagan,1954)3. We did this by seeking to identify the key events on the horizon forfamily members at the first Stage Two interview. The responses to questionsabout these horizons would then form the basis for second interviews, withthe aim of reflecting on the role of these key events in shaping the parentingexperience of disabled people and the availability and suitability of formal andinformal support.

Recruitment

Parents in Stage One were to be recruited from a variety of voluntary sectorgroups in Leicester and neighbouring areas, with various publicity activitiescarried out by ourselves. Stage Two families were to be recruited via acute andcommunity NHS trusts locally, given the focus on recently impaired or diagnosedparents. Here we describe the recruitment strategies we used, and the changeswe made in order to achieve meaningful samples in each stage.

Stage One

In Stage One we interviewed members of 67 families, recruited from Leicester,neighbouring areas and, occasionally, from other parts of England. The disabledparent was interviewed in each family. In most cases, we also interviewed achild and, in dual-parent families, the spouse. We adopted a randomised approachto selecting which child would be interviewed (in cases of there being morethan one child aged between seven and 18). This was to avoid the danger ofbias resulting from parents putting forward particular children as candidates forinterview. We used a Kish grid, produced specifically for our randomisationprocess, although parents were entitled at all times to veto the participation ofany individual child4.

In a small number of families, partner and/or child interviews were notcarried out. The reasons for this are varied, and included the unavailability ordisinterest of the partner, and requests on ethical grounds that no child interviewshould take place. While this was disappointing at one level, it also meant that

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we were able to capture the experiences of parents for whom some of theissues were particularly difficult, and who would not have volunteered otherthan on the understanding that no children would be involved. We decided,therefore, to proceed with families so long as it was possible to conduct aparent interview, but not if the only option was to interview a partner and/orchild.

Contact was made with organisations of – and for – disabled people, as wellas day centres and other community facilities. Initial visits, at which we coulddiscuss the aims of the project, were often followed by individuals in theseorganisations making informal enquiries on our behalf and distributing ourliterature to possible participants. (Other contact was made by telephone, andby providing newsletters.) We attempted to cover as many local and nationalorganisations as possible, including general groups (guilds of disabled people,advocacy organisations, and so on) as well as impairment-specific groups.

As Stage One progressed, it became clear that it was proving difficult torecruit families with disabled fathers, single-parent families, and parents withmental health impairments. Given our commitment to an inclusive notion ofparenting, and in recognition of the exclusion of fathers from much researchon parenting, we subsequently made even greater efforts to indicate in ourliterature that we were interested in disabled fathers as well as mothers.

We also faced difficulties in recruiting parents with mental health impairments.This is reflected in the final sample, although the number of physically impairedparents who also talked about mental health impairments helped to redress thebalance. Our request in the introductory literature to interview one childaged between seven and 18 may have been significant here. Despite ourassurances that we were not connected to any formal or voluntary service, andthat our research did not intend to pass judgement on the quality of respondents’parenting, some parents may have been anxious about our research. This reflectsbroader fears about family separation and the negative involvement of outsideprofessionals.

Our response to ongoing difficulties in recruiting parents with mental healthimpairments was to intensify our contacts with voluntary organisations and toapproach several general practices in Leicestershire with the aim of them helpingus with recruitment. A large proportion of adults with mental healthimpairments are unlikely to receive secondary or inpatient care, and their main(perhaps only) point of contact with formal support is likely to be their GP(Meltzer et al, 1995), although we are aware that many will receive no formalmedical support at all. We therefore received ethical approval for recruitingparents via general practice. It still proved difficult to recruit parents withmental health impairments, but the sheer volume of invitations to parents knownto meet the criteria for inclusion, backed by a covering letter from their GP,enabled us at least partially to address the impairment group imbalance in theachieved sample.

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Appendix One

Stage Two

Recruitment for Stage Two involved making contact with medical and nursingstaff specialising in neurology, trauma and orthopaedics. In addition, weestablished contact with consultants in the local mental health services. Ethicalapproval for this stage was obtained. We devised the following inclusion criteriain Stage Two, with the aim of capturing a more longitudinal perspective onfamilies where parents had experienced the recent onset of impairments:

• participants should have recently experienced a diagnosis of, or severedeterioration in, a neurological or psychiatric condition or have recentlyexperienced a traumatic injury involving moderate to severe long-termimpairments;

• participants should be parents, with at least one child between the ages ofseven and 18 ordinarily resident with them (discounting any current periodof hospitalisation).

It became increasingly clear that this approach was unlikely to yield the required12 families. This was partly because of the inherent difficulty of recruitingfamilies at a time of great disruption and difficulty. It was also partly becausepeople experiencing traumatic injury are frequently transferred to specialistspinal and head injury units elsewhere, while our ethical approval extended toLeicestershire only. Consequently, we were limited to recruiting fromLeicestershire Trusts.

We then adapted the inclusion criteria for Stage Two, in order to increase thechances of finding the required number of families, but also in the light ofongoing analysis of our Stage One questionnaires. Our interviews with parentsin Stage One told us that impairment was only one factor among many othersthat structured the experience of parenting and family life. At least as importantwere the social, economic and environmental contexts in which parentingtakes place. We therefore felt that a set of inclusion criteria for Stage Two thatrested too heavily on diagnosis and severity of impairment risked ignoring thisbroader context and leant too heavily on the medical model. We made secondarycontact with consultants and nursing staff who were helping us recruit forStage Two, and asked them to reconsider including families where a diagnosis,deterioration or injury may or may not be recent, but for whom major lifechanges were either taking place, or were about to take place. This allowedthem to include those parents whose impairments were long-standing andrelatively stable, but who, for instance, were about to have a new baby, or whowere divorcing.

In addition, we identified a number of families from Stage One interviewsfor whom significant changes were anticipated. For example, these includedfamilies who were on the point of having further children; had talked aboutimpending significant changes in service use; or had particularly difficult short-and medium-term employment and financial issues to resolve. We then returned

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to these families and conducted semi-structured qualitative interviews exploringchange in the same way as we had for those originally recruited as Stage Twofamilies.

Data management and analysis

Our pilot work revealed the degree of complexity, change and variability withwhich disabled parents live. As Stage One interviews were progressing, it becameapparent that what people were telling us outside the structured range of possibleanswers was often more illuminating than the data available from ‘tick-this-box’ answers. For instance, parents with fluctuating impairments found it difficultto answer our sections on support for parenting without distinguishing betweenspells when they saw themselves as ‘ill’ or ‘well’.

Our pilot work allowed us to build as much flexibility into the questionnairesas possible, often involving complex, multi-layered grids, and asking parents todistinguish between times when the disabled parent was ‘ill’ or ‘well’. However,it was still impossible to design questionnaires that could encompass neatlyboth the heterogeneity of the sample (in terms of impairment, as well as familyshape and demographic characteristics) and the patterns of change and variabilityin the life of each family.

For these reasons, we thought it important to draw out the qualitative themesarising from each interview in a systematic fashion alongside the growingbody of quantitative data. Following each interview, we wrote a short summaryof the key issues identified by respondents. In addition, we carefully extractedall relevant themes from the questionnaire, and organised them into relativelycoherent clusters. Each theme was entered in a grid that gave the basiccharacteristics of the family concerned, including number of children, genderof disabled parent, family income, the impairments of the disabled parent, andfamily shape. This enabled us, on subsequent analysis, to contextualise data ina manageable way. Once the process of compiling themes and data entry hadbeen conducted, we were able to analyse the qualitative and quantitative datafrom Stage One in a more reciprocal and complementary way.

In Stage Two we analysed the transcripts for each interview5. In analysingthese transcripts, we were aware that the families in the two stages were lessdistinct, in terms of recent onset, than we had originally intended. Whatdistinguished Stage Two families was the scope and extent of change they werecurrently experiencing. We therefore decided to avoid analysing Stage Twotranscripts for clusters of themes in quite the same way as we had for StageOne (we already had more than enough data from our 67 Stage One families).Instead, we analysed the transcripts around the central organising themes ofchange and complexity across a range of issues, including impairment, familyshape, significant life events, service input, and so on.

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Appendix One

Notes

1 The age at which children are included in research is always a matter of judgement.We limited our interviews to children aged seven to 18, since they could articulatetheir experiences better than younger children, which would aid us in overcomingsome of the subject matter’s complexity.

2 All research materials used are included as appendices in Olsen and Clarke (2001).

3 The approach is often applied to research into the views of health service users and/or disabled people regarding formal and informal support available to them (Pryce-Jones, 1993; Kemppainen, 2000; Martensson et al, 2001; Muir and Ogden, 2001).

4 A small number of parents took the opportunity to do so, mainly on grounds of achild’s lack of knowledge about parental impairments, learning disabilities on the partof the child, or a concern that the child would find the interview too difficult.

5 The exceptions to this were the six Stage Two families who had been followed up fromStage One. In these cases, we only had transcripts from our second visit.

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Appendix Two

APPENDIX TWO

Comparisons with the ‘Looking AfterChildren’ (LAC) community sample

As discussed in Appendix One, we also collected data on children’s abilitieswith regard to a range of self-care tasks and developmental skills. The questionswere adapted from the Looking After Children (LAC) schedules, and allowedsome degree of comparison between the children in our sample and those in acommunity sample on which the original LAC materials were tested (Ward,1995). Table A.1 presents the data for the children in our Parenting and Disability(PANDD) study and compares them with those for the original LACcommunity sample (three children have been excluded because they were belowthe age of seven at the time of interview). The table is split into three broadcolumns representing the three age bands used in the LAC schedules andreproduced in our study (ages 7-9, 10-15 and 16+). Each age group is thensubdivided (the data from our study have been left unshaded, and the data fromthe LAC shaded). The questions for each sample are then listed in italics. Thisenables the reader to compare the data for children in the same age band acrossthe two studies. For instance, we can see that 76.9% of seven- to nine-year-oldsin our study could get a drink or a snack for themselves, compared with afigure of 93.3% for those in the LAC sample. However, it also enables us tocompare the children in our study with older children in the LAC sample,reflecting concerns about the ‘false maturity’ experienced by the children ofdisabled parents. For instance, 31.5% of young people aged 16+ in the LACsample had filled in a claim form. In our sample, the figure was 44.4% for thoseof a similar age, but only 11.1% for those aged between 10 and 15.

We must be cautious when interpreting these data. Firstly, the numbers aresmall and valid percentages are given only as an indication of the breakdownof the sample in response to each question, rather than as an indication ofstatistical significance. Secondly, while the LAC sample questions for all children(up to and including those aged 15) were asked in the third person – that is, toprofessionals – all of our questions were directed at children themselves. Thirdly,the two samples are not matched in any respect other than age. Any differencemay therefore be attributable to other factors distinguishing the groups, suchas the likelihood that our sample of children experience greater poverty thanchildren in a random population sample.

However, the samples seem to indicate two things. Firstly, the children inthe PANDD sample appear to possess a range of self-care and developmentalskills comparable to those of their age-matched peers in the wider community.There are no areas in which the children in our sample have a radically different

166


profile of answers to those of their age-matched peers in the LAC sample.Secondly, it suggests that the children in our sample are not unusually advancedin their performance of the self-care skills covered. In general, there is a widedifference between the performance of self-care tasks in our sample, and theperformance of those same tasks among older children, whether in our studyor in the LAC community sample. For instance, 38% of children aged 10-15in the LAC sample can undertake simple repairs unaided, such as changing aplug or fuse, with 39% unable to do so either with or without assistance. Thecorresponding figures for the 10-15 year olds in our sample are 30.5% and41.7%. However, for seven- to nine-year-olds in our sample, the figures arevery different: 7.7% are able to undertake repairs and 76.9% are unable to do so.

The one area that appears to indicate some degree of unusual maturity isusing a launderette or doing the laundry. Those aged 16+ in our sample havemuch greater experience of this (albeit based on very small numbers), and theexperience of 10- to 15-year-olds in our research mirrored that of those aged16+ in the LAC sample (but once again, based on small numbers).

In summary, the data suggest that the children of disabled parents are likely tohave similar levels of self-care development skills to their peers in the widercommunity, and are unlikely to have acquired self-care skills any earlier. However,more research (with greater numbers) is needed in order to verify thesesuggestions, to explore broader areas of self-care and other-care, and to includeanalysis of gender, social class, family shape and other potentially significantvariables.

167

Appendix Two

Tabl

e A

.1: C

om

pari

son

betw

een

the

LA

C c

om

mun

ity

sam

ple

and

PAN

DD

sam

ple

for

a ra

nge

of

self-

care

and

deve

lopm

enta

l ski

lls (

valid

% f

igur

es g

iven

in b

rack

ets)

Ch

ildre

n a

ged

7-9

yea

rsC

hild

ren

age

d 1

0-15

yea

rsC

hild

ren

age

d 1

6+ y

ears

PAN

DD

LA

CPA

ND

DL

AC

PAN

DD

LA

C

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Q1.

Can

the

child

get

a d

rink

or s

nack

for h

im/h

erse

lf?Ye

s10

(76.

9)Ye

s84

(93.

3)Le

arni

ng2

(15.

4)Le

arni

ng6

(6.7

)N

o1

(7.7

)N

o0

(0.0

)To

tal

13To

tal

90

Q2.

Can

the

child

mak

e th

eir b

ed?

Yes

9(6

9.2)

Yes

69(7

7.5)

Lear

ning

2(1

5.4)

Lear

ning

13(1

4.6)

No

2(1

5.4)

No

7(7

.9)

Tota

l13

Tota

l89

Q3.

Can

the

child

ans

wer

the

tele

phon

e?Ye

s11

(84.

6)Ye

s79

`(9

5.2)

Lear

ning

n/a

Lear

ning

n/a

No

2(1

5.4)

No

4(4

.8)

Tota

l13

Tota

l83

Q4.

Can

the

child

mak

e an

em

erge

ncy

tele

phon

e ca

ll?Ye

s10

(76.

9)Ye

s74

(82.

2)Le

arni

ng0

(0)

Lear

ning

7(7

.8)

No

3(2

3.1)

No

9(1

0.0)

Tota

l13

Tota

l90

168


Tabl

e A

.1: C

ont

d.../

Ch

ildre

n a

ged

7-9

yea

rsC

hild

ren

age

d 1

0-15

yea

rsC

hild

ren

age

d 1

6+ y

ears

PAN

DD

LA

CPA

ND

DL

AC

PAN

DD

LA

C

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Q5.

Can

the

child

coo

k a

simpl

e m

eal?

Yes

3 (2

3.1)

Yes

26 (

72.2

)Ye

s93

(93

.0)

Lear

ning

2 (1

5.4)

Lear

ning

8 (2

2.2)

Lear

ning

7 (7

.0)

No

8 (6

1.5)

No

2 (5

.6)

No

0 (0

.0)

Tota

l13

Tota

l36

Tota

l10

0

Q6.

Can

the

child

use

a p

ublic

tele

phon

e?Ye

s8

(61.

5)Ye

s29

(80

.6)

Yes

96 (

96.0

)Le

arni

ng1

(7.7

)Le

arni

ng4

(11.

1)Le

arni

ng2

(2.0

)N

o4

(30.

8)N

o3

(8.3

)N

o2

(2.0

)To

tal

13To

tal

36To

tal

100

Q7.

Can

the

child

go

to th

e sh

ops

or h

aird

ress

ers

alon

e?Ye

s8

(61.

5)Ye

s35

(97

.2)

Yes

99 (

99.0

)Le

arni

ngn/

aLe

arni

ngN

/aLe

arni

ngn/

aN

o5

(38.

5)N

o1(

2.8)

No

1(1.

0)To

tal

13To

tal

36To

tal

100

Q8.

Can

the

child

do

repa

irs s

uch

as c

hang

ing

a pl

ug o

r a fu

se o

r han

dlin

g to

ols?

Yes

1 (7

.7)

Yes

11 (

30.5

)Ye

s38

(38

.0)

Lear

ning

2 (1

5.4)

Lear

ning

10 (

27.8

)Le

arni

ng23

(23

.0)

No

10 (

76.9

)N

o15

(41

.7)

No

39 (

39.0

)To

tal

13To

tal

36To

tal

100

169

Appendix Two

Tabl

e A

.1: c

ont

inue

d

Ch

ildre

n a

ged

7-9

yea

rsC

hild

ren

age

d 1

0-15

yea

rsC

hild

ren

age

d 1

6+ y

ears

PAN

DD

LA

CPA

ND

DL

AC

PAN

DD

LA

C

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Q9.

Can

the

child

und

erta

ke s

impl

e fir

st a

id (s

uch

as p

uttin

g a

plas

ter o

n if

you

cut y

ours

elf)

?

Yes

9(6

9.2)

Yes

27(7

5.0)

Yes

90(9

0.0)

Lear

ning

2(1

5.4)

Lear

ning

7(1

9.4)

Lear

ning

6(6

.0)

No

2(1

5.4)

No

2(5

.6)

No

4(4

.0)

Tota

l13

Tota

l36

Tota

l10

0

Q10

. Has

the

child

eve

r use

d th

e la

unde

rett

e or

don

e th

e la

undr

y?

Yes

19(5

2.8)

Yes

7(7

7.8)

Yes

46(5

1.7)

No

17(4

7.2)

No

2(2

2.2)

No

43(4

8.3)

Tota

l36

Tota

l9

Tota

l89

Q11

. Has

the

child

eve

r sew

n on

a b

utto

n?

Yes

21(5

8.3)

Yes

7(7

7.8)

Yes

72(8

1.8)

No

15(4

1.7)

No

2(2

2.2)

No

16(1

8.2)

Tota

l36

Tota

l9

Tota

l88

Q12

.Has

the

child

eve

r fill

ed in

a c

laim

form

?

Yes

4(1

1.1)

Yes

4(4

4.4)

Yes

28(3

1.5)

No

32(8

8.9)

No

5(5

5.6)

No

61(6

8.5)

Tota

l36

Tota

l9

Tota

l89

170


Tabl

e A

.1: c

ont

inue

d

Ch

ildre

n a

ged

7-9

yea

rsC

hild

ren

age

d 1

0-15

yea

rsC

hild

ren

age

d 1

6+ y

ears

PAN

DD

LA

CPA

ND

DL

AC

PAN

DD

LA

C

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Ans

wer

NA

nsw

erN

Q13

. Has

the

child

had

to n

egot

iate

with

an

orga

nisa

tion

like

a ho

spita

l or s

ocia

l sec

urity

by

him

/her

self?

Yes

8(2

2.2)

Yes

4(4

4.4)

Yes

18(2

0.2)

No

28(7

8.8)

No

5(5

5.6)

No

71(7

9.8)

Tota

l36

Tota

l9

Tota

l89

Q14

. Has

the

child

eve

r wor

ked

out h

ow to

read

a b

us o

r tra

in ti

met

able

?Ye

s22

(61.

1)Ye

s9

(100

.0)

Yes

88(9

8.9)

No

14(3

8.9)

No

0(0

.0)

No

1(1

.1)

Tota

l36

Tota

l9

Tota

l89

171

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185

Index

Aaccess

information 43-5see also barriers

access to parenthood 151-2adoption 15age

and parenting 116-20young carers 72, 72, 97-8, 100, 101

agoraphobia 141Alderson, P. 156Aldgate, J. 20Aldridge, J. 14, 15, 16Allan, J. 28Andron, L. 12, 13anorexia 140-1Appleby, L. 11Atkin, K. 56

BBarlow, J. 29nBarnes, C. 128, 140, 154Barnett, B. 16barriers 37, 63-5, 67, 149, 151

formal support 40-8informal support 48-52parenting support 3, 4, 6schools 118-19see also access

Barron, K. 18Barrowclough, C. 29nBebbington, A. 10, 153Becker, S. 14, 15, 16, 72, 102, 153Beckett, C. 128-9Begum, N. 12, 17Belsky, J. 22, 23Beresford, P. 18, 106, 139, 140, 143, 144Bilsborrow, S. 14Bird, G. 6‘Blue Book, The’ 22Booth, T. 12, 13Booth, W. 12, 13Borsay, A. 24Bowlby, J. 29nBrannen, J. 28

Index

Page references for tables are in italics; those for notes are followed by n.

Brindle, D. 17Bronfenbrenner, U. 22Burleigh, M. 7Bury, M. 145

CCampion, M. 5, 12, 53Carers Act 1996 14caring work, young carers 75-6, 77,

78-80, 78, 79Carlisle, D. 11Cassell, D. 10-11change xii-xiii, 103-4, 125-6, 148,

153-4family shape 109-16impairments 120-3

child poverty 3, 5, 6child protection 22, 46

and learning disabilities 12, 13and mental health impairments 9-10,

11-12, 153child rearing see parentingchild welfare, legislation and policy

19-24, 26-7children

desire for more 109-12, 109loss of 113-16research methodology 155-7, 163nunderstanding of impairment 133-6see also young carers

Children Act 1989 xii, 5, 19-22, 25, 26,27

children in need 22, 25, 26-7Children (NI) Order 1995 27Children of Courage Awards 14Children (Scotland) Act 1995 26-7chronic fatigue syndrome 40, 116-17,

123, 133, 155Clarke, H. 128, 163nColeman, J. 3, 29nColeman, R. 10-11Community care: Agenda for action 24Community Care (Direct Payments) Act

1996 24-5community care legislation 24-7

186


Cotson, D. 23, 28Cottrell, D. 10, 11Croft, S. 144Crossing bridges (DoH) 142Crow, L. 127, 137-8, 149

DDartington Social Research Unit 9-10,

22, 46, 153De Chillo, N. 10Dearden, C. 14, 15, 72, 102, 153death, children 114, 124De’Ath, E. 6Department for Education and

Employment (DfEE) 119Framework for the assessment of children in

need and their families 2, 14, 22-4, 26,46, 149-50

Department of Health (DoH)Child Protection research programme

9-10, 22Children Act 19community care 24, 25Crossing bridges 142Fair access to care services xii, 25, 26Framework for the assessment of children in

need and their families 2, 14, 22-4, 26,46, 149-50

National strategy for carers 9, 14SSI inspection 13, 26, 42Supporting Parents programme xi

depression 10, 141diagnosis 104Dickens, C. 11direct payments 17, 24-5, 65-6, 92, 93,

151disability 148-9

attitudes of professionals 41-2medical model 7-8, 23and mental distress 133-44and parenting role 133relationships and parenting 128-36research 6-7see also social model

Disability Discrimination Act 1995 24-5Disability Living Allowance (DLA) 143disability movement 24

and mental distress 143parenting 2, 17-18, 28

disabled women 2, 17, 18discipline 8distress see mental distress

divorce 4-5, 61-2domestic violence 52, 61, 113domestic work 47

research 6young carers 73-5, 73, 74, 75, 97-8

Dowdney, L. 12-13Drewett, A. 24dual-parent families see family shapeDuncan, S. 11-12

Eecological perspectives 22, 149-50education 118-20, 149Edwards, J. 28employment 57, 58, 124-5, 148

and parenting role 132, 133and young carers 96

equal opportunities 6, 24-5, 149-50equitable treatment 25ethnicity 44, 51, 152eugenics 7, 12exclusion 37, 150

FFair access to care services (FACS) (DoH)

xii, 25, 26Falkov, A. 9Fallon, K. 14family breakdown 4-5, 61-2, 112-13,

115-16, 150-1family members, informal support 50-2family policy research 4-6family shape 148, 153, 157

change 109-16, 125-6young carers 72-3, 72, 82, 82, 95-7,

100-1, 150-1caring work 76, 77, 78, 78domestic work 74-5, 75

see also single parentsfamily support 3-4, 6, 22, 23, 29nfathers 3, 28-9, 110-11, 126n, 152Fatimilehin, I. 51feminism 2, 17, 18, 28Ferri, E. 4, 5finances 124-5Finger, A. 17Finkelstein, V. 129, 142Flanagan, J. 159formal support 37

barriers 40-8, 151and informal support 54-7, 128

187

Index

use 38-40, 38, 39young carers 89-95

Framework for the assessment of children inneed and their families (DoH, DfEEand HO) xii, 2, 14, 22-4, 26, 46,149-50

Frank, J. 14French, S. 127, 129, 138, 142

GGath, A. 13gender 27-9, 37, 148, 150

employment 57, 58and housework 6and parenting 60-3, 65young carers 95, 97, 100, 101see also fathers; mothers

Gibbons, J. 22, 29nGilhool, T. 12Goldschmidt, V. 11good enough parenting 12, 28Goodman, M. 7Gran, J. 12Green, R. 21Greer, B. 8Griffiths Report 24Gross, D. 10

HHallet, C. 29nHandley, C. 16Hardiker, P. 21Harding, L. 5, 6Hasler, F. 17, 25Hatton, C. 14Hawes, V. 11Health of the nation outcome scales 11Health and Social Care Act 2001 25Henricson, C. 4, 29n, 120Heslinga, K. 7, 8Higgins, J. 14Hill, M. 20Hirsch, B. 29nholistic approach, young carers 15home care 39Home Office (HO), Framework for the

assessment of children in need and theirfamilies 2, 14, 22-4, 26, 46, 149-50

housework see domestic workhousing 59-60, 59, 149Hughes, B. 138

Human Rights Act 1998 29n

Iimpairments 127, 128

children’s understanding 133-6experience of 136-8and life course 104-5onset and variability 120-3, 126and parenting role 133research methodology 155and social model 148-9variability 148see also mental health impairments;

physical impairments; sensoryimpairment

Incapacity Benefit 143inclusion 28-9inclusiveness 18income 57, 58, 59, 149

see also povertyIndependent Living Fund (ILF) 17,

65-6, 92informal support 37, 52-4, 149

barriers 48-52and formal support 54-7, 128and gender 62-3schools 120young carers 96-7, 101

information 43-5invisibility 1, 41, 103, 125, 126n, 147

in research 1, 2-6

JJack, G. 51Jade, R. 17James, A. 156James, G. 9Jamison, R. 8, 29nJohnstone, L. 139Jones, D. 142

KKeith, L. 29nKelley, S. 7Kemppainen, J. 163nKestenbaum, A. 25Kowalewski, B. 8

188


Llanguage barriers 44, 45, 64-5learning disabilities 12-13, 23LeClere, F. 8legislation 19

child welfare 19-24community care 24-7

life course 103, 126nimpairment and disability 104-9

Lloyd, E. 3local authorities 24-5Looking After Children (LAC)

schedules 84-5, 156-7, 165-6,167-70

Lucey, C. 11, 12

MMadge, N. 29nMahon, A. 14manic depression 107-8, 110, 141marginalisation 37Martensson, J. 163nMason, M. 17Maternity Alliance 7, 8, 21ME 40, 116-17, 123, 133, 155medical model 7-8, 23, 24, 27, 104,

135-6, 148-9Meltzer, H. 75, 160mental distress ix, 127, 144

barriers to support 137children’s understanding 136mind–body dualism 138in social model 138-44, 149understanding 131

mental health impairments 127barriers to formal support 40-1, 47and childhood experience 104formal support 39, 93impact on parenting 9-12, 153and racism 51sample families 31-2, 32young carers 72, 72, 82-3, 82, 94caring work 76, 77, 78, 79-80, 79domestic work 75

Meredith, H. 14Miles, J. 10, 153Mizen, P. 156Morgan, P. 5Morris, J. 9, 17, 18, 24, 29n, 129, 154,

155Morrow, V. 6, 95Mortley, E. 3, 28, 29n

mothers 28, 126ndepression 10experience of parenting role 132mental health impairments 9parenting support 3

Mowbray, C. 9Moyers 157Muir, E. 163nmultiple sclerosis (MS) 7, 47, 104-5,

111, 124, 134Munoz, N. 14myalgic encephalitis (ME) 40, 116-17,

123, 133, 155

NNadash, P. 25National Family and Parenting Institute

(NFPI) 4, 29nNational strategy for carers (DoH) 9, 14Newbrough, J. 12Newman, T. 29n, 157NHS and Community Care Act 1990

xii, 19, 24Northern Ireland 27

OOakley, A. 4, 6, 28, 29nOgden, J. 163nOliver, M. 5, 29n, 61-2, 154Olsen, R. 29n, 163nO’Neil, A. 14onset 121-2, 125, 126, 129Oyserman, D. 9, 11

PPackman, J. 21Page, R. 14pain 8parenthood 105-7, 151-2parentification 15-16parenting 127-8

attitudes of professionals 41-2change over time 116-20disability movement 2ecological perspectives 149-50experience 132-3and gender 27-9, 60-3impact of learning disabilities 12-13impact of mental health impairments

9-12

189

Index

impact of physical and sensoryimpairment 7-9

research 1, 2-4, 6-7within disability movement 17-18

parenting support 3-4, 6, 22, 23, 29nParker, G. 16, 29n, 62, 89, 128partners 157-8Parton, N. 10, 20Patel, N. 51Paterson, K. 138pathology 6-13, 27, 147Penhale, B. 9, 10, 28Peterson, J. 6physical impairments

deterioration 104-5formal support 39impact on parenting 7-9and mental distress 141-2sample families 31young carers 72, 72, 82-3, 82caring work 77, 79, 79domestic work 74, 75

Platt, C. 14Plumb, A. 139policy see public policypostnatal depression 117-18post-viral fatigue syndrome 40, 116-17,

123, 133, 155poverty 3, 5, 6, 37, 67, 148

see also incomepregnancy 106, 107-9, 110pre-school children 116-18Priestley, M. 24, 125primary schools 118-20privatisation 5professionals 38-9, 38

attitudes 41-2, 56, 61, 106-8, 110, 111,125

conflict 45-6key 44personal connections 44-5turnover 43see also social workers

Prout, A. 156Pryce-Jones, M. 163nPsychiatric Morbidity survey 75, 78public policy 19, 149-50

child welfare 22-4community care 25-6parenting support 29n

QQvortrup, J. 156

Rracism 37, 51, 67, 152Radke-Yarrow, M. 29nRatcliff, B. 6Reder, P. 11-12relationship breakdown 4-5, 61-2,

112-13, 115-16, 150-1relationships 128-31research 1, 19, 27, 151

parenting 2-4social and family policy 4-6young carers 14-16, 153

research methodology 31-3, 31, 32, 33,34-5, 153-63

rheumatoid arthritis 137Roberts, H. 29nRoker, D. 3, 29nRutter, M. 29n

SSapey, B. 5, 61-2Sayce, L. 11, 21, 139school-age children 118-20Scotland 26-7secondary schools 118-20sensory impairment 7-9, 31separation 112-13, 115-16Shah, R. 14Shakespeare, T. 29nSheppard, M. 10, 12, 28, 153Siddall, R. 15single parents 113

formal support 39-40young carers 72-3, 72, 74see also family shape

Skuse, D. 12-13Smith, C. 3-4, 29nSmith, K. 4, 5social care services 39social exclusion 148social model 19, 29n, 144-5, 148-9

and community care 24-5and disability movement 18learning disabilities 12-13and lived experience 127-8, 137-8and mental distress xiii, 138-44and research methodology 154-5

social policy research 4-6Social Services Inspectorate (SSI) 13,

26, 42social workers 39-40, 39spouses 157-8

190


Stanley, N. 9, 10, 28Strathclyde Centre for Disability

Research 27sudden onset 121-2support xii, 7, 37, 63-5, 66-7, 148

barriers 6, 149direct payments 65-6mental health impairments 11through understanding 131young carers 151see also formal support; informal

supportSupporting Parents programme xi

TTanner, D. 136, 142Tew, J. 139, 142Thoburn, J. 22Tierney, S. 140-1Tisdall, E. 26, 27transition 152Tunstill, J. 5, 20, 22Twigg, J. 56Tymchuk, A. 12, 13

UUPIAS (Union of the Physically

Impaired Against Segregation) 29n

VValuing people 29nvariability 122-3, 134, 148voluntary groups 44Vondra, J. 22, 23

WWalker, A. 14Walker, L. 8, 29nWang, A. 11Ward, H. 156, 165Wates, M. 17-18, 29, 29nWatson, N. 29n, 144Webster-Stratton, C. 3White, C. 9, 29nWhite, S. 20Wilson, A. 106, 140Wing, J. 11Winnicott, D. 28women 2, 17, 18Wrighton, E. 128-9

YYoung Carer Research Group (YCRG)

14, 16young carers 1, 13-16, 27, 69, 85-6,

100-1, 150-1age and gender 71-2, 71caring work 75-6, 77, 78-80, 78, 79dilemmas and strategies 86-9domestic work 6, 73-5, 73, 74, 75family shape 72-3, 72formal support 89-95identifying 70-1, 70impairment groups 72, 72informal support and family structure

95-8own perspective 80-3, 81, 82research 153research methodology 156-7, 165-6,

167-70service provision 83-5, 83, 84as social actors 98-100young children 116-18

ZZarb, G. 25Zeitz, M. 9Zill, N. 6

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Parenting and Disability

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Transcript of Parenting and Disability